Kiera Rose: Micropreemie at Large

Bronch done, now waiting for Airway Appointment...

2011-07-13T15:26:00.002-06:00

So, Kiera's bronchoscopy wasn't as nice as it could have been. Plus, Kiera, is pretty ticked off about the whole thing so trach changes have become a bit more adventurous. She has a granuloma in her airway above the trach that needs to be surgically removed before with can look at decanulation. It looks like the ENT doc may not be able to get her in till late August! I am pretty dissappointed since we only have a small window when they will decanulate. (No decanulations happen during RSV season). Then I had the pleasure of the med frag case manager telling me, "You need to get on this. This is very unusual for a child to have their trach this long. None of the kids I work with have had theirs this long." etc, etc, etc...I paraphrase. Like I haven't been trying to get this done since April!? Like I don't realize Kiera's course is extreme!? Like I need someone pressuring me to get mor things done!? ^%@(%^$ Thanks for the input. Of course, what does she know...5 - 9 years seems to be a norm for some of the people I have met with airway issues.

Anyway, we're in limbo for a little while. Kiera's EEG was abnormal while sleeping so they increased her seizure meds. Food is getting better, and a formula change to Compleat is a huge improvement in the diaper department. Gotta go for now. Just had to vent.

Finally!

2011-06-02T17:49:00.002-06:00

Okay, I know I've been quiet in this forum, but life has pretty much been routine for a little while. We are still waiting with bated breath for respiratory counts in the PICU to decrease enough that we can get Kiera in for an elective bronchoscopy and start looking at procedures for possible decanulation. Things may step up in activity soon.

The BIG news is...Kiera signed potty and went #2 in the potty for the first time ever! (Yes, I realize she will be 5 in August). I don't know how consistent this will be, but it's certainly a first step.

No Vent since Monday 3/28 7AM!

2011-03-30T18:28:00.002-06:00

So the countdown begins! Kiera is officially on her HME with between 1/2 liter and 1liter O2 24 hours a day! Her Ventilator has gone dormant! We are trying to schedule a bronchoscopy for her near the end of April to investigate our next step toward getting her trach tube out. Things just seem to be happening exponentially around here.

By the way, she is getting to be such a big girls. She is oh so BRAVELY attempting to eat some bites of "big girl" (baby) food.I may get adventurous and start grinding some things too. She can also put her HME back on by herself when it falls off. Sometimes she needs a little help, but when she can't do it, she holds it close to her trach tube until she can get help from an adult.

I guess that's all I really have for now. There will definitely be more to come!

Kiera can READ!

2011-03-14T17:44:00.004-06:00

Yup...she's a genius. :) Kiera has been reading her sign language book to us for about the last month, and I was wondering if she recognized the words or just the pictures and illustrations of the signs. Soooo...with my 1st day off for spring break I wrote some of her words on a piece of paper and tested her. She was a bit distracted wanting to do other things, but she very clearly recognized and read (using sign language) 7 words: FRIEND, DIRTY, CLEAN, GRANDMA, BOOK, READ, and TRAIN. I am pretty sure she knows others, but I will have to test her later when she's in the mood to tolerate me. :) She also correctly identifies many letters of the alphabet and has been reading her I SPY alphabet book. I think her favorite letters are E and X. She can also spell GLUE and I think reads that word too. What a smarty pants! I'm so proud of her.

I have long loved this poem

2011-03-07T19:06:00.006-07:00

A MONGOLOID CHILD HANDLING SHELLS ON THE BEACH*

Richard Snyder

She turns them over in her slow hands,
as did the sea sending them to her:
broken bits from the mazarine maze,
they are the calmest things on this sand.

The unbroken children splash and shout,
rough as surf, gay as their nesting towels.
But she plays soberly with the sea's small change
and hums back to it its slow vowels.

*When the poem was written, the designation
Down syndrome was not common terminology.

I first studied this poem in my 10th grade Honors English class over 20 years
ago. It made an impression even then, and I thought of it Sunday at my
nephew's birthday party. The cackling, healthy, developmentally on-track
children were all playing and running around. Kiera was quite self-entertained
exploring the house and the yard. She would occasionally take notice of the
other children, but generally kept to her own plan. As the children broke the
pinata and scurried for the candy and toys, Kiera was quite content handling
pebbles in the backyard landscaping. I had to smile to myself at the full circle
nature of my life. Who knew that the poem I learned in 10th grade would hold
such a personal application for me so far down the road? I am so glad that I
was paying attention.

Major Strides!

2011-03-06T20:47:00.002-07:00

We upped Kiera's anti-seizure meds, so seizure activity seems stable. Kiera is feeling great and getting into everything. She is down to 1 to 1.5 liters of Oxygen during the day. She is signing a ton and trying to communicate. She seems hungry for knowledge. She requests that her diaper be changed, attempts teeth brushing a little, washes her hands, and actually tried eating about a dozen pea-sized bites of yogurt tonight. She is still VERY orally defensive, but I think she is very hungry. She probably needs her formula volume increased a little, but I am trying to take advantage of her clear desire for food and see if we have a window of opportunity here. She is learning all of the topics on her sign language videos and enjoys sitting on the potty (unfortunately AFTER the diaper is dirty for now). I think she is understanding our use of reason with her when it comes to these scary developmental steps. She is also playing better with other children. She is still very self entertained but occasionally allows other children into her world. Today we went to her cousins' birthday party. They had a HUGE jumper rented which Kiera went in for the first time. Another little girl said "hello" to her and Kiera said "hi." It comes out as an airy whisper when she says it, but it was clear to me. Things seem to be progressing exponentially. We are pretty excited to see what lies around the bend.

"Starting" to freak out a little...

2011-02-10T09:55:00.002-07:00

Okay...I probably shouldn't blog this, but I can't get on facebook at work, and I need to have an on-line freak-out to get all my thoughts on "paper."

As I mentioned before, Kiera has had a two very long (30 minute) seizures that were clearly seizures, even to my "untrained" eye. She's been on anti-seizure meds since Decemeber, we've done the initial EEG, CAT scan, MRI, etc, and we are "patiently" waiting for a neurology seizure study that I think is scheduled for June. I was fine with waiting... until yesterday ...when I started to wonder about some of Kiera's other unusual activity and whether she has had other seizure activity that has been going unrealized.

Scenario: Last night she woke up from a nap. She had been sleeping on her arms in kind of a traditional napping pose. She was cranky at waking up. When I picked her up, her arms remained in the pose, folded hand over hand and elbow to the ear. She went back to "sleeping" and lying against my chest in this pose. When I would try to extricate her she was kind of like a magnet, wanting to lie against my chest and arms continuously in this position. She seemed aware at all times, but would cry if we tried to move her arms. She seemed cold and was shivering, although it's been cold in our house, and her eyes were very dilated, but it is also kind of dimly lit in the living room. There was some slight lip smcking, but not a lot, that I attributed to being thirsty or waking up. When I handed her off to daddy, the normal thing for her to do would have been to change sides for her arms, but although she was laying against him on her left side, her arms remained in the pose on her right side. Finally, I sat her up and was able to slowly massage her arm down or get it "unstuck." After this weird event, she fell back asleep and slept ALL night, having already been sleeping since before 6PM.

Now I am freaking out! Going back in my memory, I remember these frozen pose situations after naps at least 3 or 4 times. I started researching seizures on-line and found Tonic Seizures that seem to describe some of what was happening. Another person's description mentions her son raising his arms over his head and grimacing. ACK! Now I am going through all the times she raised her arms over her head upset about unison sound that would make her cry like she was in pain and re-evaluating the whole thing. What if the sound was triggering a seizure which would make her arms stiffen like that, and the crying was BECAUSE of the arm stiffening (not the sound sensitivity that we had assumed) and wanting to bring her arms down but not being able to? How many times has she done this raised arm thing? Oh...50... 100? I haven't counted. What if her developmental delays are being enhanced by seizure activity? What do we do now?

Big sigh. I have a call into the neurologist and am waiting to hear back from her so we can discuss this. Maybe they can move up her appointment. This is so weird. 4 1/2 years of medical drama, and NOW I'm freaking out. Does anyone out there in blogosphere have seizure experience that they might offer?

Kiera is so sick right now...

2011-02-01T19:39:00.003-07:00

Keep Kiera in your prayers so we can stay out of the hospital. Both she and I have been unable to permanently shake this nasty respiratory stuff that we caught on Christmas Day. I realize I haven't posted much, but life has been pretty non-stop miserable. I finally feel better today than I have in over a month (even with the chronic coughing and nose blowing), so I hope there is light at the end of the tunnel for her. She started running fevers and vomiting Friday after we thought we were finally getting over the last cold. It seems like she's getting tag teamed by different viruses. I've got her on round the clock fever meds and had to bump her nebs back to every 3 hours in hopes of clearing her out so we don't have to admit her and risk her catching something else in the hospital.

Our extreme weather yesterday probably didn't help. It reminds me of that big storm back in 2007 the day of Kiera's tracheostomy surgery. I think there is 2 feet of snow in my back yard. Too bad Kiera isn't well enough to enjoy it. It will be nice one day when she is well enough to do something simple like sledding down our driveway. Here's to hoping for that day to come soon. In the meantime, I've got a sick kid to hold. Gotta go.

Baking Christmas Cookies with Mommy

2010-12-18T21:02:00.003-07:00

Kiera often seems so young since she is a bit different socially than other 4 year olds and signs instead of speaking. It's easy to keep thinking of her as a baby. However, today she seemed so "little girlish." I was baking Christmas cookies and started with a batch of ginger snaps. I rolled them into balls and rolled them in the sugar and then showed Kiera how to smash them with the bottom of a plastic baby bottle. I only had to show her once, and she immediately took the bottle and repeated the skill on all the other cookies. A few times she turned the bottle over and used the open end which cut the cookies. I think she actually did that on purpose because it amused her. I think she did a pretty good job...don't you? I had to do very little repair. Most cookies were baked as smashed by Kiera.

River of Lights Trip

2010-12-18T10:32:00.005-07:00

Our Rio Grande Botanical Gardens does a wonderful Holiday display of lights. We took Kiera before it got too cold. (It was still cold enough). She loved the lights although she hadn't had a nap and fell hard on the cement while walking. She had to stay in the stroller after that. Overall a fun trip.

Belated Pics from Pumpkin Patch Trip in October

2010-12-18T10:15:00.008-07:00

McCall's Pumpkin Patch in Moriarty, NM. Not the best view. We had to take a pass on the hay ride to go pick a pumpkin just because of health care issues and not wanting to be stuck out in a pumpkin patch with a respiratory emergency. Maybe next year.

It was a little colder than we had expected because of the wind so we kept Kiera on the vent instead of an HME and O2. Kiera LOVES wind in her face.
The Corn Kernel Bin (in place of a sand box) was the neatest discovery. This was Kiera's favorite part of the trip. (Mine too)
Fascinated by the bales of hay.
Oh...and one of Kiera's favorite things to touch...TIRES. She grabs the tires everytime we unload her from the car.

Hello chickens. There were a lot of neat animals exhibits with a petting zoo, goat pen where they did some tricks, and a little bunny rabbit village. Kiera mostly liked the fencing, tires, and rocks.

Second non fever related Seizure

2010-12-18T09:53:00.004-07:00

Not much to say except last night Kiera had her second seizure without a fever to trigger it. From the two she has had, there are a few patterns. She has had them about 10 minutes after falling asleep. Both days seemed to be days that she was particularly sensitive to auditory stimuli, crying at the sound of her story reader. She had an ear infection when we went in for the October seizure. She has just gotten over a cold this week. Maybe we need to take her in and see if she has another ear infection? She seems fine though. The most striking similarity between the two events is that both days I had just finished explaining to a family member (first Jer's sister and this time my mother) that taking Kiera on vacations still seems a bit unrealistic. Hmmm...God likes to help me re-enforce that position.

Everything went okay. We successfully administered the rectal valium, and she came out of it about 10 minutes after meds were administered. The weird thing is that I was holding her while she was sleeping and didn't notice the seizure right away. My guess is that it lasted about 20-25 minutes, but she may have been seizing 5-10 minutes before we detected it. I heard her lips smacking but couldn't see her face the way I was holding her and thought she was sleep sucking a paci. Then I felt drool on my arm and still thought she was just really soundly asleep and drooling. When I went to put her down to go wipe my arm off, I finally realized she was mid-seizure. It didn't seem quite as severe as the last one. She wasn't as stiff or single point fixated, but it certainly was nerve wracking and left me with seizure dreams all night. I keep worrying that maybe she has had them in the middle of the night without bei
ng detected. We will still have to call neuro and see where we go from here.

Something New in the Health Drama

2010-11-02T18:12:00.002-06:00

Well...our week was eventful...certainly not boring. Last Tuesday seemed to be a normal day full of me reporting to multiple friends and family members as to the continuing improvement and amazing health Kiera has been having, especially with her full days spent on the HME with O2 tubing and only using the ventilator at night.

Sooo...since good old Murphy's Law seems to like my house, we had a NEW development. Tuesday night (Wed AM) at 12:03 Kiera started having a complex partial seizure with no fever! It lasted 30 minutes! While she has had 2 febrial (fever induced) seizures in the last 4 years, this is her first seizure with no apparent stimulus. She did, however, have an unnoticed ear infection which was diagnosed when we got to the hospital, and after the CT scan, spinal tap, EEG, and MRI, the ear infection seems to be the only possible cause of the seizure. The ambulance took over 15 minutes to arrive (which I think was due to dispatch mistakenly leaving out the urgency of "4yr old on a ventilator having a seizure." ) So maybe the duration would have been shorter if she had gotten the anti-seizure meds about 10 minutes earlier. I am a teensy bit perturbed about that. Even though she came home Thursday, we are still waiting on the prior-auth on her PRN anti-seizure med so we can get it filled. Worst case, we'll have to call 911 again if we don't have any.

The whole thing left us pretty wiped out. It felt like we were caught looking...like the last 4 years of drama was still a honeymoon period that we didn't know we were enjoying. Luckily, my sister was awake and monitoring Kiera when Kiera's seizure began so we had 911 on the phone within 2 minutes. I'm not really sure we would have noticed it as quickly (if at all) if we had been on duty and sleeping like we do when we don't having nursing coverage. I think we may have to start bringing in the poodles on non-nurse nights and see if they will alert us if something happens. Good thing I have smart dogs, despite some lady's know it all comment on my blog a while back. :)

See Anything Missing from this Picture?

2010-09-24T21:44:00.002-06:00

Where's the big V? Kiera is up to two 4hour stretches a day on just oxygen connected to her passey muir valve on her trach! The backpack she is wearing is her feeding pump for the brief hour+ of her 3 daily feedings. Otherwise, she is pretty free to roam. I will probably need to finally child proof some things this weekend. :) The only trick is that the O2 tube can disconnect very easily so she needs to be very closely monitored while on the O2...even moreso than when she is on the vent which is, of course, all the time.

She is also increasing her signs exponentially! I found a Little People Zoo Set on craigslist and she adores the dolphin. She signs dolphin whenever she see it. It seems to be the first toy that she really identifies by it's name, other than baby or book, I guess. She learned the sign on her sign language videos and transferred the sign to the context of the toy effortlessly. Now she likes to rewind the Little Mermaid to dolphins scenes, and the playmat with the zoo makes dolphin sounds and says dolphin when you push the "d" button, which she does repeatedly. It is really exciting to see how much she is "speaking."

1st 30 minutes on a trach collar! No Vent!

2010-09-02T06:13:00.003-06:00

Yesterday Kiera got to try her first 30 minutes off the vent! I will upload pictures later (as you see now is later). She maintained O2 SAT's of about 93 on 3 liters of O2 flow with the trach collar. The unfortunate thing is that the humidity machine that accompanies the trach collar is actually less portable than the vent with no internal battery and a short "leash." The trial worked out well while watching Blue's Clues or coloring. I have to ask our doc or RT if it is okay to get longer circuitry (tubes) to give her more mobility. I also need to see if there is other equipment they didn't send us like HME's to put on the passy muir valve sp she can walk around with just the HME and O2 tubing. This is an exciting first step(or 101st depending on your perspective) toward getting Kiera off her vent. She will be more exposed to getting sick because the O2 system is an open system rather than closed like the vent, so we will have to ask that visitors this winter have had flu shots and wash hands religiously (not just on Christmas and Easter).

Kiera had the most fun at the zoo today!

2010-08-21T22:29:00.003-06:00

I just wanted to chime in quickly. We took Kiera to the zoo today, as we have done many times before, but today she really seemed a bit more engaged. Of course, her favorite thing to look at is the fencing and rocks rather than the animals. She has been watching her zoo signing video, so many things were more noticeable for her. She absolutely LOVED the seals and sea lions; although as my sister said, watching them is really not much different than watching TV. I signed seal and made barking sounds, and she laughed and laughed. The other new activity for her was the fountain park. I don't really know what to call it, but there is a grated platform with random water sprays that cycle. The observant parent of a trached child can direct said child so as not to stand directly over a spout. Kiera LOVED watching the other kids get soaked and play. We let her walk on the grating and get a little sprayed while being vigilant to not let her get water in her trach. She did very well. She clearly saw herself as one of the children and wanted to do what they were doing. It was wonderful! She signed that she had "fun." Definitely a do-again. We have a water park (small splash type) near us, and I may go check it out to see what she thinks.

Kiera's Birthday and New Trach

2010-08-21T11:30:00.004-06:00

Kiera had a fabulous backyard sprinkler party with a Little Mermaid theme! She enjoyed getting hit by the sprinkler even. The kiddie was more for the other kids, but she seemed to enjoy the festivities. We have found a bubble spinner that she can actually make work without having to blow, so she loved playing with bubbles. Our entree for children consisted of butterfly shaped PB and J sandwiches. Adult got brats and dogs.

I am happy to add a princess castle cake to my repertoire of amateur cake decorating. I think it turned out very well.

Kiera tolerated the singing of Happy Birthday a little bit better but had to cry when we all clapped. She clearly looks concerned, but I swear, all we were doing was singing. :)

Yesterday, Kiera had her newest trach tube put in. This one is CUFFLESS. The old ones had an inflatable balloon to seal her airway which also made it more difficult to teach her to talk. Now I am HEARING her make noises even without her speech valve in! Hooray! It will still be a while before she talks, but she is definitely starting to vocalize some things like making sound when she wants our attention or a different video. I can't wait to see what she does. She vocalized "hat" the other day while signing "hat" during her signing video. She is also on CPAP (no vent rate) while awake and a low rate of 6 when sleeping. Barring illness, we should get to start trach collar trials September 1st! That is where she is only on oxygen assistance without the pressure support from the CPAP.

Of course, there is a small drawback with the trach collar trials. The nurses tell me that Kiera will be MORE able to get sick because of the "open system" of the trach collar as opposed to the "closed system" of the ventilator. What that means for friends, family, and visitors is even more diligence with hand washing, sanitizing, and flu shots. I hadn't thought about it since, in my mind, she would be more able to fight things off as she got older. Anyway, sorry, but I will have to be a germ-a-phobe once again this fall.

4th Brithday Swiftly Approaching!

2010-08-07T12:36:00.002-06:00

Wow! 5 more days till Kiera is 4 yrs old! What a trip this has been. Kiera is currently on CPAP settings all day while awake, and a rate of 10 while sleeping. We are busily planning a Little Mermaid Party for her. She is signing more signs every day and did the cutest thing the other day when the new nurse asked her how to sign "family." Kiera grabbed the nurse's hands and made her do the sign for "family." It was actually one of the few things I have yet to see her do as a response to a request. She is such a little teacher. She is really enjoying her toddler bed and her ability to get OUT of bed when she should be IN bed. She is busy, busy, busy. Jer and I are both still job hunting. This will hopefully be the week since school starts the 18th. The backyard is looking fantastic! Jerry has made such a change back there. I can't wait to post party pics since we are having it in the backyard. I have been busy making various creations with the humble produce he has grown so far...peach cobblers, pies, crisps, zucchini bread. Jer has a jungle of basil and makes awesome pesto. All in all, life is pleasant at the moment.

Kiera's First Broadway Musical (in ABQ that is)

2010-07-17T10:23:00.003-06:00

We ventured out last Sunday and took Kiera to see the Beauty and the Beast musical at our local performing arts venue. It was quite a logistic adventure with limited handicapped seating, of course only in the expensive seats. We opted for regular seats since there weren't 3 together in wheelchair, and Jer went to great lengths to get us aisle seats with the understanding that we could keep kiera's stroller with the vent and equipment on it in the aisle. However, upon arrival, the aisle was clearly too narrow for that with fire codes, so we ended up transferring her equipment to one seat and had her alternate laps to seat in which actually worked out quite well. We silenced alarms for the show so that she wouldn't alarm if she cried or laughed or yawned (always fun alarms). Since she's been feeling pretty well, we haven't had to suction much so we got away with suctioning only before the show, during intermission, and after. Honestly, I think her favorite part was the walk around the lobby during intermission. She did seem to enjoy the show since she absolutely adores Beauty and the Beast. It was a good FIRST show to take her too since she knows the whole movie and whole soundtrack. She has sensory issues with applause and cheering, so she did cover her ears and cry a bit during applause, but she recovered quickly since it would be followed by a song she liked. She also wasn't scared during scary parts since she knows the outcome already. She seemed a bit "concerned" during a wolf chase and when the beast gets injured, but you could tell that she knew things would be okay. Kiera probably would have done even better had I been successful at making her take a nap earlier in the day as I had tried. We had preferred a matinee, but hadn't been able to find acceptable seats during that show. Luckily, I did come prepared with pacifier in tow for coping with all the input. If only the trumpet had toned it down a bit...he was a little over the top. :) All in all, I really enjoyed being able to take her to the show. Her awed stare at the stage during the opening sequence was just priceless!

"HAPPY" Independence Day!

2010-07-05T11:14:00.003-06:00

Kiera was leagues better with the sounds and festivities of Independence Day this year. She did pretty well last year, too. If you recall, 2 years ago she just cried and cried over the noise. She has been getting better with the choir at church, as well. For the louder fireworks she just covered her ears but there was no crying at our house this year. We have a great view of the whole city, so while we set off very tame fountains and such, we were able to enjoy all the illegal fireworks around town from our front porch without taking part in their purchase. :) They served as a great backdrop for our show. This bodes well for later this month. We bought tickets to see Beauty and the Beast (The Musical) at Popejoy since Kiera loves Beauty and the Beast so much. Hopefully, she will enjoy the songs so much that any noise from applause will be overlooked on her sensory board. :) It was quite a trick to try to get seats where we could park the stroller with all her medical equipment. The wheelchair seating would only allow us 2 seats, so we would have had to split up. I really felt like making a little stink over equal access, but Jerry managed to get us an aisle seat on the wing, so we'll make due and hope for the best. That's all for now. I've got some grading to do.

Back to CPAP trials...FINALLY!

2010-07-04T13:15:00.004-06:00

Hey there! I have still been so, so busy! I agreed to teach both sessions of summer school which has consisted of 9.5 hour days and trying to cram 6 chapters of Algebra or geometry into 3 weeks of 4 hours a day classes. Little high school brains are exploding everywhere. Now the first session is over Tuesday, and the next one begins. The 4th of July holiday has provided a teensy break to try to catch up on important things like mopping the floor in my kitchen and breathing. :)
Kiera finally got to start her CPAP trial up last week and is doing GREAT! She is full of energy and very BUSY. I turned my back for just a bit about 30 minutes ago, and the following picture is evidence of her busy-ness.
I wonder how often the health care equipment companies get ventilators returned with purple crayon scribbles all over them? i haven't cleaned it yet cuz I think it's freakin' hilarious! Plus it gives her a personal touch, don't you think?

I will try to start planning Kiera's 4th birthday party soon. It should be the weekend following Aug 12th, but I haven't even glanced at a calendar yet. I am in a bit of denial over the fact that she will be 4!!! (It reminds me of the NICU nurse practitioner who said she thought a worst case estimate could be that Kiera could be trached till she's 5. I remember thinking it was a bit extreme, and now she probably needs a pay-off on that bet.) It will be a Little Mermaid themed party. I framed some Little Mermaid posters that I have had since the movie came out (20 years ago!). In fact, I think one was the free poster I got for going to see Little Mermaid on it's release date! :) They were kind of beaten up and rolled up in a box in the garage, but Hobby Lobby did a fantastic job of fusing them to a board and making them look like new. I pulled down some of her nursery decor and started transitioning her room to a "big girl" room. I found a great Disney princess toddler bedding set at Other Mothers (thrift store). Kiera loves seeing her favorite princesses on her sheets and pillow cases. I hung the posters last night, and it was so cute to see her gazing at them fondly this morning. She is such a doll.
She is learning lots and lots of sign language, but still only makes airy sounds at best verbally. Kiera is also more interested in exploring food finally. She likes crumbs! Her favorite food lately is parmesan cheese. She also enjoys breaking crumbs off graham crackers. She will also chew on a bottle nipple with about 10 cc's of juice or milk in it to get tastes. It certainly doesn't qualify as drinking by any means, but it does help distract her from her more destructive chewing.

Well, I guess that gets us up to date, and pretty much where we were ventilator-wise in October! C'est La Vie! Cross our fingers, say some prayers, and keep on chugging along toward that ventilator free day in the future.

Kiera is on the upswing lately (knocking on wood)

2010-05-03T18:39:00.004-06:00

I know I have been a little lax in posting. Teaching middle school this year has been really keeping me more than busy (and very stressed) considering that I stand by my previous decision that middle schoolers should be locked up till they are 14. :) I have also become a teensy bit addicted to Facebook which has become the recipient of more of my photo posts. I do plan to continue the blog for health updates and some pics...don't worry. I just have to remember to log in. I am sure I will have more time once I get the 6th and 7th graders off my back.

Kiera seems to be on the upswing the last few weeks. She is climbing the walls (or at least the TV entertainment center). We finally came a little bit down on her pressure support, but are at least a few weeks away from trying CPAP again. It was getting warm out and finally motivating me to look forward to getting Kiera outside, and then we had a freeeezing cold snap that kept her away from her friends' birthday party Saturday, so I was a little disappointed since it is one of thew few parties she gets invited to.
I am really excited today. I signed Kiera up for a fun program that makes cross stitch quilts for children with medical problems. I did it a while back in 2008 or 2009, and actually forgot that I had submitted the entry. Then they contacted me a few weeks ago to let me know the quilt was finished and ask where to send it. It just arrived about an hour ago. Kiera is napping, so she hasn't even seen it yet, but it is GORGEOUS! I am overwhelmed. It is just more lovely than I could have imagined. She is going to LOVE it! Kiera has been obsessed with watching Aladdin lately. She still loves Beauty and the Beast and Little Mermaid. We also play the soundtracks of the same 3 faves up in her bedroom at night and she just bounces in her bed out of excitement. I kind of want to got over to her pack 'n play right now and wake her to see how she likes it. So instead, I am letting her sleep and posting a few pics.
Kiera is using more and more sign language lately. She loves watching Signing Time and is expanding her sign vocabulary by leaps and bounds. She can "sing" (sign) the whole "Silly Pizza Song" which is challenging for most adults. It is exciting to see her mimic signs and finally use them to communicate a little bit. I just ordered the audio cd's for some of the songs and a few more dvd's to help her add to her repertoire.

Wow! I missed March!

2010-04-06T10:31:00.002-06:00

Sorry guys. This has been the most crazy time in our lives. After a year and a half of trying to launch our restaurant and having given it everything we had to give, we had to call it quits on March 15th and chalk it all up to bad timing. So, now we are in transition. Jer is job hunting for the first time in 16 years. I'm trying to stay sane teaching middle school and finish out the school year. Hopefully, Zane will be graduating high school in the spring. Mitch...we love Mitch. :) And Kiera is on her wellness roller coaster. She spent the last week pretty sick and finally seemed to turn a corner on Sunday, so hopefully the virus has passed, and without a hospital trip. Although, she has been on nebulizers every 3 hours 24/7, and I am pooped and in desperate need of night nursing relief and SLEEP. I was up at 3am and 5:45 having only gone to bed at 12:45 in the first place. There is not enough coffee to make me function today. We aren't, yet, back to her lower vent settings to try CPAP again, which is disappointing. But hopefully, now that it is getting warmer we will get past cold season and start getting closer to getting off the stupid ventilator. It's getting to the point where she weighs as much as the vent, and the trip up and down the stairs is tiring.

On the fun side, we added a new rescued silver standard poodle to our backyard brood. He was a mess, but after the groomer trip yesterday, he has cleaned up quite nicely. I am trying to change his name to "Pascal." He is 11 months old. Hopefully the name, "Charles," hasn't stuck too much yet. We'll see. I just can't call him Charles, and Pascal fits with my French mathematician theme. Descartes has gotten very good at controlling himself around Kiera. He purposely walks around the ventilator rather than between Kiera and the ventilator and, thus, over her circuit. He also seems very conscious of her needs when she starts having problems or the ventilator alarms. It's quite cool. Both dogs are really enjoying having eachother to play with.

Delayed Update...:)

2010-02-24T07:50:00.003-07:00

I apologize again for any lag in updating. Life has been crazy as usual. My home nursing has had a few changes including some new nurses, some night coverage, and some uncovered days where Jer has to take a turn. Kiera came home Super Bowl Sunday, and is back to wearing us all out. We have a two week follow up with pulmo today and will change Kiera's new longer trach tube in his office since I am a little nervous about how changing this trach will differ from the last, if at all. We also see GI guy, so we'll get it all done at once. I took off from school for these appointments, although, frankly, after the day I had yesterday, I wouldn't have minded taking off without the excuse. I hope pulmo will make a few vent changes today and get us back on track for CPAP trials. Kiera has been making a lot of vocal sounds lately (mostly "Ahhhh" s). It's been sweet to hear.

Gotta go for now and start the packing process for the dr's office field trip. It will probably take an hour to an hour and a half to get me ready and get Kiera ready and all her supplies packed.

Kiera is chewing her way out of the hospital!

2010-02-06T12:55:00.002-07:00

Well, we are officially getting discharged tomorrow. Yesterday, Kiera chewed through 3 suction ballards, her leads cable, the black lead, and her SAT monitor cable. She left the temp probe alone because she went through one of those on Thursday. She's also biting her nails since this last admission, incidentally. Can we say I have a stressed out little 3 year old who is done being sick?

So, I just finished cleaning the carpet in her play room (living room) where all the g-tube and feeding pump mishaps have routinely fed my carpeting. I cleaned it during her last admission, as well. It's actually a very convenient time since hospitalizations are the only block of time I have to enable the carpet to dry for 24 hours.

I have some new nurses starting this week since I lost one due to the hospitalization interferring with her paycheck, so I am excited to train new people. Plus, some of my great nurses who have been out with injuries the last few months, and well now and planning to start working for me again, so I will have some night coverage again. Kiera is also getting a new therapist this week who likes to use music and dance in her physical therapy, so I think she will have fun with that.

Other than that, it is a usual overbooked week. Restaurant business to run, Grades due, Kiera care, Mary Kay meeting, house to clean that has fallen apart, high schoolers to monitor, TAXES! Can't wait!

Bronchoscopy and Longer Trach Tube

2010-02-01T22:50:00.002-07:00

Well, we had a lovely little look at Kiera's airway today and change her trach from her current 46 mm long one to her previous 60mm long trach (incidentally the trach she had before our Houston trip in 2007.) I have been a little twitchy about this change (much like Kiera's airway), but the tracheal collapse was quite clear on the bronch so the longer trach will help stint it open so to speak. It also bypasses Kiera's infamous* pig bronchus which may help in ventilation. I am not sure what this means for long term. We may get to finally go back to our cpap trials, although this may indicate a need for the trach longer term than just during ventilation. As always, we will wait and see. Kiera did seem much more comfortable tonight than she has been in a week and since we really haven't been off steroids for any significant amount of time since Thanksgiving, maybe we can finally accomplish that, too.

* That's "IN famous" for lovers of the movie "Three Amigos."

Sorry I haven't posted lately...and that hospitalization is the impetus.

2010-01-30T11:56:00.003-07:00

Hey loyal blog followers. I apologize for the slacking in my posting lately. The holidays were so hectic combined with getting the first semester of teaching completed and grades posted. I didn't even feel like my 2 weeks off was much of a break when I was finished. I had probably the least amount of home nursing coverage over Christmas break than I have had in 2 years of being home with Kiera and very few nights, so I was exhausted by the time I had to go back to school. Then a very good friend lost her 29 yr old daughter around the 8th, and I went to be with her for the funeral. That was directly followed by me catching a nasty virus from the wee beasties I teach HmPV which is comparable to RSV. That was two weeks ago. I was sick for a week before giving it to Kiera and Jer, and Kiera is now in the PICU once again on the big ventilator. We admitted her last Saturday. I hope we can get her back up to snuff this week and get her home, though she is still on continuous albuterol nebs and steroids every 8hrs.

She is also very grumpy ('roid rage :) She really has a hard time being in the hospital these days, and it is so hard to leave her alone and miserable. Plus, since Jer has been sick and I am still coughing 2 weeks later, it is a little awkward visiting and trying not to get others sick. Getting a sub for my students is a hopeless task and really more work than just going to work, so I teach every day and go to the hospital at 3:30. Last night I was there till close to midnight. The night before I came home earlier around 7, but had to spend my evening till after midnight tutoring the 16yr old and getting him caught up on missing math homework so he would be ready for a test. I definitely feel pulled in ALL directions lately. I still need to get some office work done at the restaurant, but can't stand leaving Kiera alone at the hospital to go get it done.

Kiera is supposed to get a bronchoscopy once she is off continuous nebs. I think if I were to estimate, she may not come home till later in the week at best. I also lost my w-f nurse because she couldn't take the hit on her paycheck from Kiera's hospitalization so she took another patient. So in the midst of all of this I am also trying to find another nurse to cover those shifts so that Jer and I can get to work. The fun never ends. :)

2009-12-05T21:26:00.005-07:00

Sick at Thanksgiving.

Creating works of art one week later.She's a tough cookie.
Kiera is becoming aware of the pictures on the page and trying to color inside the lines. Very impressive. She will spend an hour at a time at the table coloring without interruption or direction.

A teensy weensy step in the feeding drama...

2009-12-05T20:31:00.002-07:00

So I have had one of those "safe feeders" in my cabinet of failed attempts to get Kiera to eat which I haven't messed with in over a year, I suppose. Kiera has become quite adept at licking cheetos and crackers and will stick her fingers in my drink and lick them, so I thought we might revisit the safe feeder. For those who are unfamiliar this looks like a pacifier handle with a little bet basket to put food in that the child sucks on to strain the food into their mouth. I filled it with some of my very sweet mashed sweet potatoes from Thanksgiving, and she actually spent about 10 minutes licking it and mashing it on her face. She got a few good tastes out of it and now has a sweet potato covered face. Very cute, and it looks like I might be able to add this to her "feeding" repertoire such as it is.

Kiera home and back to the weaning process...

2009-12-04T19:05:00.002-07:00

Sorry about the delay. Kiera ended up spending the whole Thanksgiving break in the PICU. We came home Sunday, and life was crazy. I steam cleaned my downstairs carpet, decorated, and did some Christmas shopping while she was enjoying her SPA RESORT stay at the hospital with the world's most expensive babysitter. Once home, we were still on nebulizers every 3 hours around the clock, and it took a few more days to get her back to a closer to normal state. She is on increased pressure support, so I am not sure how much of a set back that is in our weaning process. In fact, we have done no CPAP trials since home, but we follow up with the doc on Tuesday. I am in the crunch time teaching where kids suddenly panic and realize that the F they have had for the last 16 weeks may, in fact, be their permanent grade if they don't turn in their work, so every day has been hectic. I will be SOOOO glad in two weeks when I can finally take a break. Of course...then the restaurant will need me to see what I can get done on our books for taxes. Being supermom can definitely be wearing.

Therese

Oops...3 out of 4 Thanksgivings spent in an ICU

2009-11-26T01:05:00.003-07:00

This will be brief because I need to go to bed. I slept at the hospital Tuesday night when we had to admit Kiera to the PICU around 10PM. She is doing better now than she was at home last evening. We had reached our limits for keeping her SATs up on our equipment where she was de-satting on 6 liters and after piggybacked nebs (3 of 5mgs each in an hour). Now she is on the "big ventilator" (the 840) and increased O2. She spent 24 hrs on continuous albuterol nebs and we are trying to stretch her to a do-able neb schedule for home. As long as nebs can get stretched tonight, we may get to try putting her back on her home vent tomorrow and hopefully get her home as soon as Friday. I guess Kiera just wanted to spend her Thanksgiving with the many, many health care workers for whom we are thankful this Thanksgiving and the last four. It has left us with a very empty, quiet house tonight and yet, again, another holiday spent in a hospital. Good news is that her preliminary results from her respiratory viral culture seemed to come back negative on all the big viruses they test for. Bad news is, I guess we don't really know what has caused her to have such a severe hiccup. We are still waiting for a final culture from her trach aspirate which could give some idea. Of course, she is on steroids, antibiotics, etc.

Cute things: Last night when bagging her at home through some bronchospasms, my mom was here, and Kiera started blowing kisses to grandma and the nurse WHILE I was still bagging her. It was the weirdest "Rose Bowl Parade" image. Then, in the hospital this morning, the first trip since she could walk and was healthy enough to stand, she stood up in her crib and started messing with the touch screen hospital monitor above the bed that monitors her O2, heart rate, etc. She must have thought, "well this is a TV I haven't seen before." I would have cracked up if she had figured out how to change their settings without the nurse seeing just to see the reaction.

"Cruising Along"

2009-11-15T16:57:00.002-07:00

This wil be quick...I have been so busy it is difficult to have time for everything. Probably a year ago I bought Kiera a ride-a-long toy at our local kids' stuff thrift store for $7. At the time, her legs were too short to reach the ground while sitting on it, but I thought she could use it to walk. Recently, after growing a bit and learning to walk, she has learned to push herself on the car and steer. It's a Winnie the Pooh vehicle with lots of bells and whistles and she loves to express her "Road Rage" by honking her horn the whole time. I am so glad I didn't give up on it. She is so cute, and it helps her break up her secluded indoors day.

Friday we went down on pressure support a smidge. She is back on CPAP while awake and a rate of 10 when asleep. Her pressure support is currently 12. Next will be 9 and then 6. Once we are at 6, Dr. Glasser says we can try an HME with just oxygen (I assume while awake only). I am not sure on a timeline, but I'd like to guess that maybe by Christmas we could have some ventilator free photographs to post. With all the toys she's accumulated for "therapeutic reasons" being rid of her ventilator is really the only Christmas gift she needs. We'll see. All depends on whether or not Kiera gets sick.

Controlling Interest in Kiera Day!

2009-10-28T16:33:00.002-06:00

Hooray! We officially possess over 50% of Kiera today! (and possession is 9/10th of the law, right?) She has had 585 days of inpatient hospital living and 586 days in our house! We don't win by much yet, but at least we finally get to say she's been at home more than in the hospital.

I'd throw a party, but we can't expose her to all the stuff out there and get her sick, or the hospital scales will tip out of favor. Maybe I'll just make a cake. Ooh...Pumpkin Dump Cake! Gotta love it!

A-Okay Doctor Day

2009-10-21T18:34:00.002-06:00

Busy day, and Jer got it all done with the nurse while I was at work. It began with an o-dark-thirty (7:30AM) opthalmology appointment. Kiera's strabismus (lazy eye) may need a second surgical adjustment, but not unless she is scheduled for another surgery where he will go in at the same time. She has slight nearsightedness, but no need for correction at present. Then after rushing home for her 1 hour with her pre-school teacher, and a 100th viewing of The Little Mermaid, Kiera went to her 2:30 echo at the cardiologist...which she passed with flying colors so that the cardio guy says she is boring and that he doesn't want to see her. That means, pulmonary hypertension is still undetectable since stopping her sildenafil months ago. We'll see if that means she will stop another one of her meds, lasix. That would at least be one less thing during am and pm meds.

Kiera is currently doing great on CPAP while awake and with a vent rate at night or during naps. Her pulmo appt is Nov 6, so we'll see what the next step is. She is scheduled for an H1N1 shot on Friday. During most waking moments, Kiera walks in circles around our 1st floor with nurses or anybody available following busily behind with the ventilator et al. We are busy, busy, and I am pooped from teaching by day and watching her by night. I am definitely glad that I chose the middle school position over a high school or YDDC position, if for any reason other than the later start of my work day. We had a 7:30 dept meeting last week and a 7:30 am staff meeting yesterday, but generally school starts at 8:22 giving me the added time I need to be there with bells on (or at least one to two cups of coffee). If I had to do the 7:30 thing every day these days, I am pretty sure I would be jello.

Two more videos...

2009-09-12T12:15:00.004-06:00

Week Two of Walking- a little "topply" because she can't decide between watching TV and walking. She's able to stand from sitting without assistance or something to pull up on. She is more routinely taking 12-17 steps without falling. She can also stop mid walk and start again to wait for me to move the ventilator to keep up with her.

Laughing at Elmo's World- you can hear the faint airy sound of her laugh past the deflated trach cuff and through the speech valve. There is this scene in one episode that just makes her bust a gut every time. :)

My 3 Year Old is FINALLY a WALKER!

2009-09-04T07:21:00.002-06:00

Well, so far we are up to about 17 consecutive steps. Kiera is just making HUGE STRIDES! (Pun definitely intended). It's funny to see a 3 year old walk for the first time. Sometimes it looks like an adult would after a long rehabilitation, and other times she looks like a 3 year old trying to mimic a one year old. I will try to get another video today since she seems to improve every twelve hours. :)

Kiera has a doctor appointment today now that her antibiotics are done. Hopefully, we will get to lower her settings and get back on track with CPAP. I am waiting to hear if I will be offered the Manzano High School job I interviewed for on Wednesday while I am in the process of the State background check for the Youth Correctional Facility teaching job. We'll see what happens.

Best Video of Kiera Walking

2009-09-03T14:37:00.002-06:00

Here is the best video of Kiera walking so far, except for the fact that the camera was sideways. :) I taped this today, and it is not an anomaly. This is how she walks most of the time, as long as an obstacle like her SAT cord or the extension cord for the vent doesn't get in her way. One time today she was walking with a play fork in each hand, and I thought, great, next she'll be running with scissors. :)

Piano Recital Video

2009-09-02T16:41:00.002-06:00

Closer to Walking...

2009-09-01T16:53:00.004-06:00

Kiera is recovering from her little cold last week which caused us to go up on her vent rate, stop CPAP trials, and start oral and inhaled antibiotics, steroids, and change some nebs. Don't you love this two-step?

Anyway, today she seemed to suddenly get a different sense of balance than she has had. She took EIGHT very deliberate walking steps from her picnic table to the ottoman. She systematically tests herself here and there, and at the moment, she seems more confident about her walking. Obviously, she still has a long way to go, but I was pretty impressed.

Blue's Clues Party at the Park

2009-08-17T19:45:00.015-06:00

Some 3rd Birthday Party Pictures

Kiera is going for the BIG 3!

2009-08-12T21:41:00.010-06:00

It hardly seems possible that my former 1.5 pounder is 3 years old today, and at the same time, it feels like 3 years has been 10! We had a very busy day today which appropriately began with a doctor's appointment. In fact...she was in the exam room at the EXACT time she was born. :) Her "kid party" is Saturday, but with some family in town, we decided to go to the zoo and aquarium and follow it with dinner at the Independence Grill (THE VERY BEST RESTAURANT IN ALBUQUERQUE) and a birthday cake. However, Kiera fell asleep at dinner since we had skipped naptime, so she actually hasn't seen the cake yet or opened presents. Kiera only took part in the aquarium portion of the bio park trip. I have to say that today she was the most interactive with the fish as I have ever seen her. She definitely engaged in looking at them and seemed like such a big girl. Her first instinct when introduced to the Ray and Shark pool, with the very clear sign not to put hands in the water, was to attempt to reach over the wall and put her hand in the water. That's my girl!

Here are some pics. I will update again this weekend after the BIG Blues' Clues Party. Recognize the hat? I covered the Sherbet Bucket that she likes so much.

Kiera FINALLY trying CPAP (3yrs old next week!)

2009-08-05T22:32:00.003-06:00

So I will add a funny picture to this post as soon as I locate the other camera. Kiera had a great appointment Monday, and she is on short 30 minute CPAP trials twice a week, and we are doubling the time each week. This is BIG for us. It doesn't mean any equipment changes or anything at this point, but what we get to do is drop the rate on the vent to ZERO twice a day. She still receives pressure support and oxygen but all the breathing is her own during these trials. Dr. Glasser hopes that by Halloween we might have Kiera OFF THE VENT during the day! (Of course, barring any serious illnesses).

In addition, we have some big changes to be announced in a future post. More later. Gotta check my spaghetti on the stove.

Okay, I'm back from correcting a few problems. Kiera chewed a hole in her g-tube extender and was "feeding the floor." I did experiment with something, and she is actually more willing to open her mouth for a syringe than for a spoon, so I gave her 2 cc's of milk orally and then tried 2 cc's of baby food via syringe. It actually went pretty well. Hmm.

So here is a funny picture of Kiera...

We can't crate train a dog, but we can crate train our kid.

She hasn't yet figured out how to climb out.

Emotional Day

2009-07-08T23:14:00.002-06:00

Kiera is keeping me busy, and darn it was hot out today. I took her in the backyard to wear her out a little (which worked), but I think the heat wore me out first. She came back in and slept for 2 hours or so. Voila!

Anyway, I had her IEP today to transition her from Early Intervention Therapies to getting her services through the public schools homebound system. It was kind of funny, and probably brought on by some early morning false equipment alarms and ventilator switch out at 4am which left me not well rested; but when the lady running the meeting explained that we would be planning the "transition for Kiera to APS now that she will be 3yrs old...blah, blah, blah" I started crying. Everyone in the room, except Kiera's current EI speech therapist was looking at me stumped as to what she might have said to make me cry. Anyway, it just kind of hit me that my BABY couldn't be going "to school" even if she really isn't "going" anywhere. Sitting there in an IEP, a very familiar setting for me as a teacher and step parent, was so unreal.

So my conclusion is that if I can't hear the word "transition" in reference to Kiera without crying, that I am pretty much going to be useless for all recitals, concerts, first communion, graduations, wedding, etc from here on out. She's going to need to learn to hand her mother a box of Kleenex before any milestones...like tying her shoe, for instance. Oh...and God help any kid who ever bullies her or makes her cry.

I'm a mess.

Very Cute Observation during Blue's Clues

2009-07-03T13:52:00.002-06:00

So I have had one crazy busy week, and I am wiped out. Plus, we have reached the one month a year that every nurse on the planet apparently takes a vacation. :) So...there will be little relief this month. I just finished Kiera's noonish feeding and meds, her bath, and her trach care in addition to correcting some payroll issues this morning and working on annual awards for my Mary Kay unit. It is now 2PM, and I am in my pajamas. Unfortunately, I will be unable to shower till Kiera takes a nap (which is unlikely lately) or someone comes over to watch her while I shower (also unlikely). Of course, that UPS guy is looking pretty cute lately... Maybe I should see what brown could do for me... and have him come in and watch her so I can shower, of course. Get your mind out of the gutter.

Anyway, here is the cutest thing that Kiera did today and yesterday. I DVR all the Blue's Clues episodes so she can watch them at will and a "new" one (for us since it's no longer on air) recorded yesterday. It is the Anatomy episode. Kiera is so tickled by it. The episode starts with Steve listening to Blue's heartbeat with a stethoscope, and Kiera can't contain her enthusiasm. She LOVES Dr. Glasser's stethoscope, and she gets so excited to see it on Blue's Clues. Her body language just screams, "Oh my gosh, Mommy, do you see that? I know what it is! That's just like when I go to the doctor!" (etc, etc) Interestingly, the Jobs episode that has a doctor skit does not amuse her as much. Every time she see's that stethoscope, though, she is ecstatic.

That's about all for now. Kiera's feeding pump is having a panic attack and calling for me, so I'll need to adieu.

Climbing Wall,,,

2009-06-30T23:30:00.003-06:00

Wax on...

Wax off....

I swear Kiera climbed up there herself. She also likes to stand on the bench and support herself by leaning her legs against the table. Who knew TV watching was so aerobic? (Except those aerobic instructors who make videos...oh yeah...those. B*$#%@s. ) Anyway, Kiera is pushing her boundaries, avoiding nap time, walking all over with her walker, etc. I think she'll be walking soon enough...maybe by her third birthday. Hopefully she will delay a little in attempting to climb out of the pack 'n play or crib.

Father's Day and Family Time

2009-06-27T07:43:00.015-06:00

Mostly this post is just pictures from Father's Day and our brief visit from our California clan.It's been a fun week. Kiera got sick 2 Mondays ago and has completed a round the clock Ibuprofen and Tylenol for fevers, 7day steroid, 7day Tamaflu, 10 day inhaled Colistin, and 2 hours nebulizers treatment plan. We had taken her to church for the handicapped mass (about 20 people) where she licked a pew(I think it's spelled pough but that looked weird...bench) but I have a hard time believing she got sick that fast, less than 24 hours later. Who knows...gotta keep going forward. Anyway she is much better now. She really was quite well by Saturday prior to Father's Day and was back to 6 hour nebs at that point, so that is why we felt we could venture out to the botanical gardens and butterfly pavilion for Father's Day. So enjoy the pics and my witty captions.

"Cuddling" with Aunt Angela

Kiera meets her cousin (once removed...ie cousin's baby) Jocelyn for the first time. She is tickeled. She just LOVES babies.

"Oh...you have a paci too? Here...let me suck that for you."

"Mirror, mirror, on the door...mmm...this tastes good."

"Grandpa, you crack me up."

Daddy likes to toss Kiera around and make her laugh.

Kiera brings Jocelyn to the dark side. Both are entranced with Blue's Clues.

Hanging with her brothers.

Trying to get a cousins photo at the Botanical Gardens, but Uncle Matt's hat is calling to her.

Kiera loves watching the butterflies.

"I can walk myself." Kiera walked a good way at the botanical gardens, while holding my hand for support. She wants to be like all the other kids.

Pics of Kiera using her walker

2009-06-11T15:04:00.004-06:00

Kiera is enjoying her walker lately. She really has the hang of it and has been a pistol to keep up with. This isn't the best photo cuz the TV caught her attention, but you get the idea.

Of course, my job is to follow closely with the ventilator when she gets moving.

We took Independence Kobe Burgers to Ronald McDonald House for their board meeting yesterday, and Kiera enjoyed sitting on the Ronald statue's lap...

And driving in the pink corvette in the play area. She really had fun. Even though we were guests for 5 weeks in 2007, this was her first time in a house. They have such a nice facility here and are our favorite charity.

Feeding Therapy, Bob.

2009-06-09T21:05:00.003-06:00

My sister, Katherine, will get the title. (Maybe Matt)

So Kiera was cracking me up tonight. (as usual) I had a fruit and veggie tray out for my sales meeting. (Well...if you can call it that...some grapes, snap peas, baby carrots, and a container of ranch dressing leftover from Dion's pizza night.) She is the model of a feeding therapy session for a curious almost 3 yr old with a food aversion. She came over to the coffee table (when I really would have rather had her play in the next room with her brothers so I could work) and stuck her fingers in the dressing...didn't lick it, but rubbed it on the recently polished coffee table. After performing this experiment a few times, she moved on to the grapes which she successively threw one by one across the room. They bounced very well. Since my carpet was freshly vacuumed yesterday, I felt confident to eat them rather than put them back on the plate for my guests. Then she tried feeding me grapes (very fast...like before I could finish one she was jamming the next in my mouth). Then I signed "all done" and told her "no, thank you." She thought about this, and then proceeded to lick a few grapes herself one by one before chucking them across the room. She similarly moved on to snap peas, fed me a few, and actually dipped one in the ranch dressing as I had done, and licked the dressing...which she decided she disliked and...

chucked it.

It was quite a scene, particularly since I, at no time, became distraught or angry, and was actually quite pleased with her PROGRESS. I am sure my guest thought I was a lunatic. (actually she understands)

Kiera also made a breakthrough today which I mentioned before. She seems to consistently like drinking water from the little arrowhead bottles with fluoride with the twist up tops. My theory is that she likes the texture of the twist top and likes the control of being able to bit the lid while drinking. Of course, she is not "supposed" to be drinking water, but it's in small amounts and low flow, so I am just going to pretend I live in Houston and never heard of fistulas. This is the only thing she likes, and darn it, I like seeing her drink SOMETHING. Plus, since she won't let us brush her teeth, it should be good for her.

She's also been walking TONS today, and trying to stand on her own more. Maybe seeing all the kids at the zoo Sunday inspired her. She always seems to want to do more after spending time around other children. She doesn't really have to interact with them. She just takes it all in for later use. We did "walk" her out from the duck pond to the flamingos which was quite a distance. Jer pushed the stroller while I held Kiera's hands.

CUTEST thing this week (I know it's only Tuesday) was last night. I went to the restaurant while Jer watched Kiera. She had refused to nap yesterday afternoon so she was pretty tired. She has taken to enjoying lying on an adult pillow on the floor that has a Little Mermaid pillow case on it (that I think I bought in 1991 when the movie was still new). She knows it is hers. Anyway, the pillow was on the couch and when she got tired she half climbed up the couch to reach the pillow, pull it off onto the floor, and plopped down on it and went to sleep. She was done and put herself to bed. What a good girl.

She must have gotten the memo that she will be 3 in 2 months and that it is time for her to eat, stand, walk, and go to bed on her own.

Kiera is currently in the process of tearing apart my entire living and family rooms. All of my mail is on the floor along with all of her books. She is licking a floor lamp and banging it's plastic shade against the wall. (earlier she was hugging the piano leg). Uh oh...now she's eating the mail...gotta go.

What Kiera does while I draw up morning meds

2009-06-06T11:11:00.006-06:00

So I was busily drawing up Kiera's morning medicines at our wet bar/ oxygen bar with my back turned to Kiera as she was watching Blue's Clues. As many of you know, (especially my friend Bern) I like to re-use containers, and I have saved a few of these plastic Sherbet containers for storing blocks, scissors, crayons, etc. This particular container is used for Kiera's alphabet blocks. When I started with the meds, Kiera seemed to be playing with the blocks. When I turned around this was what I saw:

I was cracking up. She is (of course) staring at the TV, but she would routinely turn toward the glass door of the fireplace and pose for her reflection or pat her hat like so:

Kiera's fashon sense dictates that the bucket be worn askew. Clearly this is the most flattering and eye catching way to wear a Sherbet container/Hat.

Kiera is doing great and weaning again!

2009-06-03T23:04:00.002-06:00

Today was a very nice day, although Kiera was a busy bee. We had a great pulmo appt today and cut her ventilator rate to 12 and pressure support to 17, so she is now at approximately the same settings as before her illness in March except with a higher pressure support of 17 from the then 14. She will have a follow up in 4 weeks, and we'll see if we can get down to a rate of 10. We're getting closer to CPAP trials and weaning from the vent all the time.

Please love on your kids this month (and always). I keep seeing bad and worse news daily involving parents abusing children and worse, and it makes me so sad. People continuously throw away what my husband and I work so hard to hold on to. I wish more of the good stories would make the news so the world wouldn't seem like such a bereft place.

Field Medicine

2009-06-01T17:01:00.005-06:00

Kiera, the boys, and I trekked out to try a new park (new to us) today that has a mini-jungle gym for toddlers. I "cameled up" and carried the ventilator, SAT monitor and O2 tank onto the equipment while holding Kiera's hand and letting her walk. Kiera was having fun exploring the new surroundings. It all went pretty well (aside from the massage I'll need to recover from carrying the equipment) until Kiera stepped on her g-tube extender and popped her g-tube out while on the jungle gym. I had to DROP everything (literally the ventilator, o2 tank, and SAT monitor) to dig out a syringe (which I keep taped to the ventilator) to put the g-tube back in while on the play equipment. Talk about field medicine!

The cutest thing was while we were picnicing. The wind had kicked up a bit, and Kiera seems to REALLY LOVE the wind. She gets this estatic grin on her face and leans her head back to take it all in. It is quite the sight. She has also started an amusing habit when I give her snap peas (while I am eating them). She takes one, licks it, drops it, takes another, licks it, drops it...repeat. This can go on indefinitely. It's pretty funny. She also enjoys feeding me grapes...which makes one wonder if the origin of that tradition wasn't really a royalty thing but more a food aversion on the part of the grape feeders? :) Of course, I humored her and ate them.

P.S.- I have no idea what's going on with my fonts or spacing on this post. I guess I'll just have to deal with it.

Kiera still sensitive to unison sound...

2009-05-31T12:15:00.004-06:00

So I took Kiera to my friend's son's 2nd birthday party yesterday. In addition to her skipping her nap, she was pretty anti-social. She much preferred to read her book and play by herself in the playhouse. I took her in the house for story and game time with the hired clown. She was fine for a bit, but the clown started a game with balls on a blanket where every kid grabs a corner of the blanket and they raise and lower it to make the balls go everywhere. Kiera seemed to like this till everyone starting saying, "Whooo..." in unison. Then she freaked out and was crying, so rather than torture her, I took her back outside for time in the playhouse.

She did make some headway in the TASTING department. She decided to taste each and every rock in the landscaping around the playhouse. hmmm.... She also took several sips of water from a water bottle with a twist spout. (apparently available at Target). We'll have to try that for feeding therapy. Maybe we have had a breakthrough. Rocks and Water. She was also quite happy to sit diaper butt and bare legged on the rocks; however, she flipped out when I sat her on the grass and did kind of a v-sit to keep her legs off the grass, much like one would do at the beach on hot sand. Kiera was pretty tired having avoided her scheduled nap, so she lay down on a blanket for a while.

Then when it came time to sing Happy Birthday (outside) Kiera started crying again at the unison noise. Poor thing couldn't catch a break. This sensory sensitivity is really a big pain in the butt. I think the most fun she had was with the helium balloon and the rock licking. She played catch with the balloon with Daddy when we got home, and really enjoyed it till she suddenly realized she was exhausted and crashed on my lap.

All in all, it was a fun day but lots of work.

Much improved...

2009-05-24T13:18:00.002-06:00

Kiera is much improved after almost a week of steroids and antibiotics. Of course, she's getting a little puffy now. We may even venture out to the butterfly pavilion tomorrow. I hope so. I'm going stir crazy...especially with the rain the last few days and no relief since Thursday to get me out of the house. The big epiphany is that I think her ventilator heater was malfunctioning, and it's possible that she was getting cold air in her lungs for a few days even though the heater was reading at a higher temp so maybe that is what got her sick? We changed out the temp probe and heater wire Friday, and that seems to have done the trick. She's back down on 3 liters (from 4) of O2, and can probably go to 2 1/2 today. I'll try when she naps. We nudged her rate back to 14 (we had bumped it just a little to 16 when she was sick in a desperate attempt to try everything). She's back on full feedings, although we're running them a little slower but titrating up to our regular rate. I may even be able to stretch her nebs to 6 hours. I'm attempting right now, so we'll see how it goes. The last few nights of 4 hours nebs caught me out of practice. All in all, this was just a brief sickness, but we're back on track.

Have a great Memorial Day, and Eat at Independence Grill! (Montgomery and Louisiana)

A Post for the Benefit of Dr. Crow

2009-05-20T09:57:00.002-06:00

Okay, Miss Monitoring Kiera's Blog and her Mommy's Actions Daily,
I was wondering how Kiera got so sick in just one day, and now I realize it is because Dr. Crow was bugged that I wasn't posting more frequently. I wasn't posting much since we've basically been staying home in order to avoid getting sick. (Oh...and most spare time has been spent running business and getting high schoolers prepped for finals) Now that she's sick...I have a reason to post...and, therefore, please Dr. Crow. Happy? :) Of course, she would have known Kiera was sick last night if she had accepted my facebook friend request...like any good doctor would for her patient/stalker. :)

So, Kiera went from stellar, better than she's ever been for a straight month, to pretty darn sick overnight. She was a little junky Monday night after throwing up on Sunday for the nurse. I'm wondering if she aspirated. Otherwise, she really hadn't done anything to be exposed to anything other than play outside in the backyard for an hour on Sunday and play with her cousins here at home Sunday night. Drat! Anyway, she spent the day Tuesday with a running like a faucet runny nose and needing a lot of trach suctioning which then added a cough later in the afternoon followed by a vomitting spell over about a hour and a low temp. Then early this morning (4AM) she spiked another temp (about 100 on my temporal themometer). I gave her ibuprofan and an extra neb because her lungs sounded pretty diminished. The temp climbed to 103 rectally by 7 am when we gave tylenol and called the Big Gun (her pulomonolgist), begged his forgiveness for the playful message I left him Monday about how well she was doing and "demanding" and ventilator rate deduction much like one might leave a ransom message, and now she is back on a steroid course and inhaled antibiotics, along with more frequent nebs every 4 hours.

This post should now appease Dr. Crow's curiousity, and I expect that if we were to end up admitting her or something, that I would be able to assume that the PICU would no longer need to take a medical history or admission report or whatever they call it, but just refer to my blog and save us both time. I should just be able to call, say "hi, we're on our way," and the PICU will respond, "Yes, Kiera's suite is ready and waiting. We read the update." :)

Counting Down 164 days....

2009-05-16T18:09:00.003-06:00

So, here I sit, a math geek, with nothing better to do. I realized during the last hospital admission that we have yet to have had Kiera home more days than she has been in the hospital. The hospital still owns controlling shares in our baby girl. For so many, this calculation of the day their baby has been home longer than they were in the hospital is much simpler. However, with 7 readmissions in addition to the initial 514 day stay, this computation required some of my higher mathematics training. (This...children is why you need math)

Anyway, I know you're waiting with baited breath to find out what I've concluded...

Kiera's total days spent "inpatient" in NICU or PICU(this does not include regular doctor's visits or urgent care) is at present 585 days. She spent 319 days at home in 2008 and to date has had 102 days at home in 2009, resulting in total days at home of 421 so far. (BTW...her last stay in March totaled 34 days while total days in 2008 were 46 combined...eek).

So barring any further admissions, we are counting down the next 164 days. I have calculated that Kiera's 50/50 day would be October 27th; therefore, we will have controlling interest in Kiera the following day, October 28th, 2009 (Incidentally my brother's birthday and 3 days before Kiera's original due date). A PARTY WILL DEFINITELY BE IN ORDER. I will keep the date of the party updated as unexpected hospital visits occur and in case anyone would like to plan to come. I may have to make adjustments in that it will be heading into cold and flu season, but this may be a bigger event than birthdays or even her wedding! For sure...it will be a fun anniversary to celebrate!

My future's so bright...I gotta wear shades!

2009-04-30T19:48:00.006-06:00

This is pretty much the first time I have been able to get Kiera to leave a pair of sunglasses on. This pair was a gift from my Aunt Meg over a year ago. Kiera has been playing with the nurses' sunglasses and with daddy's hat, and has been getting more used to the idea of things on her head. I think she likes these glasses because they FIT perfectly. She kept looking around the room at things like she was exploring how everything looked different through shades.

Guess which brother was watching Kiera while the TV was on...

2009-04-25T21:37:00.005-06:00

I really LOVE this dress she has only worn once. I hope the marker she ate washes out. :(

First time on the Big Toy! (and Descartes gets a shave)

2009-04-25T18:03:00.015-06:00

Look, Ma...no hair!

I could've sworn this dog was bigger. He's a shadow of himself.

I love this park! It's 100% ADA accessible. Kiera got to do everything the other kids could do.(except play in the sand...we don't do sand)

Everyone likes Kiera's stickers on her stroller...that is until I tell them how she earns them. :)

It's my friend, Ashlyn's, birthday party!

And her sister, my friend, Peyton's, birthday!

My Mommy and I wore coordinating flower dresses for the flower theme.

My first time on the Big Toy because my stroller and medical equipment can access it with me! I'm big enough that I want to walk by myself.

I get a kick out of driving!

Current Pics

2009-04-14T11:04:00.011-06:00

These are all post-discharge photos from this weekend. I'll try to download the pic from my phone of Kiera on the anesthesia ventilator March 14th to show before and after.

Addendum: 4/19- Couldn't get the pics off my phone but no matter. I just had to say...take a look at Easter pics from my entries back in March 2008! I was just looking at them and seeing how INCREDIBLY FAR Kiera has come since Easter last year! WOW! Sometimes it's hard for me to notice the changes since I see her everyday. I still see my little baby when I look at her, and she is such a big girl! Now if we could just ditch "Vinny." (Or should we call the vent "Sven?")

Kiera is so HAPPY to be home!

2009-04-13T17:36:00.002-06:00

Kiera has just been smiling from ear to ear all weekend. She smiles great big smiles and signs, "I love you" constantly when she's not blowing kisses. Last night she sang "Twinkle, Twinkle" with me. She fills in the blanks between verses. i.e. "Twinkle, twinkle, little _____," and Kiera says, "ahhh." That's the best representation I can make for her singing. It's about the only sound she makes by pushing air around the cuff of her trach tube, but it's in perfect pitch! Maybe she's building up her diaphragm breathing to be a bassoonist or opera singer? :) "Maaa," and recently, "Baaa," are Mommy and Daddy. (At least that's what WE hear.)

Kiera is doing great and only on nebs every 6 hours with an extra before her inhaled Colistin antibiotic twice a day. It is incredible to believe that I was worried she might die barely a month ago. In fact, now that I think about it, it was the 14th when we had to put her in her coma with a collapsed lung. What a TROOPER! She's practically back to normal aside from some muscle weakness that is coming back gradually. Last night she was sitting at her picnic table reading a book, and she just looked like nothing unusual had happened at all last month. Today, she walked with her walker to my office from the family room (while I pushed the ventilator) so we could have an Easter egg hunt! She wasn't even standing more than a few minutes just 3 days ago!

I'll try to upload Easter pics just as soon as I figure out this camera my sister lent me. Have a great day, and if you live in Albuquerque area, we hope to see you at the Albuquerque Tea Party on Tax Day (Wednesday) from 4-7PM at Independence Grill (Our Place).

Kiera came home YESTERDAY!

2009-04-10T19:28:00.002-06:00

We are so glad to be home! Kiera fell asleep on the floor within 30 minutes in the door! She seems a little shell shocked almost. It was tough getting used to the alarms again last night. Jer and I have never been so happy to get so little sleep. She will definitely need help getting back to walking and cruising again. All we need to do for motivation is place the remote control in different parts of the living room as a lure. I also have to get used to the increased med schedule that we had gotten away from. All in all, she's doing pretty well I think. She was all smiles doing crazy eights in her stroller with Daddy on the way out of the PICU, and we are again indebted to the Presbyterian PICU staff for having our Kiera here with us and HOME! Happy Easter!

Hooray! Kiera did "Itsy Bitsy" for the first time since coma-land!

2009-04-06T21:29:00.002-06:00

So, I have yet again saved the day by micro-managing Kiera's hospital care and brought to the doc's attention that the "set-backs" they were witnessing in the last 2 days were from broncho-spasms caused by her colistin neb in too close proximity to her mucomyst neb. We'll test it this morning by holding the mucomyst neb. I am stressing out trying to get them to discharge her. The doctor is not as familiar with her (and me) as the rest, and we have both become "princesses" used to getting attention. Hopefully, she will see the big change tomorrow and work with me on getting Kiera home in tim for Easter.

Finally, this evening, 4 hours after her colistin induced broncho-spasm, she is sitting up and did the Itsy Bitsy Spider fingerplay for the first (and second) time since waking from her coma. She's playing with her stacking cups right now and stacked them 9 high (the 10th is too tall from sitting), and we had a blast reading her new favorite Beauty and the Beast book. At the end, when the Beast has turned back to a prince, the picture of the prince has the long blond hair with a "halo" of sorts over his head, and she signed "hat" or "hair" and then "love." She totally GETS this plot line. She laughed again at the movie today during the library scene and Belle's father's invention exploding AND she cries when Belle's daddy leaves in the wagon! Honestly, it seems like her muscle memory just came back. She's still a little awkward and weak, but it's impressive.

A funny new trick she discovered while we were reading her book, "Miss Spider's Tea Party," is that she thinks it's hilarious to turn the pages as fast as she can and make me read really fast. This speed reading page turning may have helped her to discover that she's stronger than she thought she was. Right now she's quite happily chewing on her cloth book.

Looking at her right now, I think I should be able to convince someone to let me spring her by Friday!

Almost there....

2009-04-06T07:46:00.002-06:00

We're still working on getting Kiera home. Her pulmonary hypertension isn't quite under control yet. She has another echo scheduled today and is currently on an IV and an inhaled antibiotic for a presumed pneumonia, and she is still on nebs every TWO hours which would be a challenge to keep up at home for too long. Hopefully, we can get her situated and home by Wednesday. I've been able to take her for wagon rides around the unit, and her methadone is being slowly weaned which is helping her be more interactive.

She is so weak from the atrophy of almost two weeks of sedation that she can barely sit up by herself. It's frustrating to me, so I imagine it's ten times that for Kiera. Hopefully, with therapy, she can get back to the walking and crawling that she was so good at before this set back. She's also lost about 2 kilos since admission. I don't know how much of that is just muscle mass or what, but she's a little flabby looking.

On a lighter note: Kiera has absolutely fallen in love with the Disney movie, Beauty and the Beast. She was so funny the other day (although upon reflection this event may have been enhance by her methadone dose)! Anyway, she totally interacts with this movie. She laughs when Belle goes into the library. I think she's thinking, "Books! I LOVE books!" Then the best part is her reaction to the scene where Belle starts talking to the wardrobe, Mrs. Potts, and Chip. When Chip talks to her while she's drinking, Kiera just ROLLS OVER LAUGHING. She was laughing so hard, tears were coming. She fell over once. It was hilarious! She was laughing as hard as I do when I watch Jim Gaffigan (who is HILARIOUS by the way). Seeing her laugh like that was really the highlight of this visit. We hadn't watched B & B much at home since I have it on VHS and my VCR is fritzy. So she's been watching it multiple times a day at the hospital.

Say some prayers for a Wednesday discharge. Have a blessed Easter everyone!

Back on her LTV

2009-04-01T11:17:00.003-06:00

Kiera finished her Terbutaline drip yesterday and is off all IV drugs right now. They put her back on the LTV (the home vent). She's still huffing and puffing a bit, and her O2 requirement is still around 45%. the highest we can go at home is 44%, and we'd be zipping through O2 fast with no room for adjustment if she had a brocho-spasm, so we really need her down to 36% continuously with only rescue bumps to 40 and 44% in order to bring her home comfortably. I am pushing the doctors to get her well as soon as possible because she is clearly depressed being in the hospital, and I think it will be much better for her to get home ASAP! I can't wait to see her face when we finally get her in her stroller. I may bug the docs to let us wheel her around in the wagon this afternoon, although because she is MRSA positive, she tends to get relegated to her room because of infection control. (I will try not to mention the irony of the fact that she caught the flu IN the hospital which did way more damage to her than her MRSA ever did... who am I kidding...I'll probably mention it.)

Wish us luck. I think it would do her good to get a wagon ride.

The Final Stretch...we think

2009-03-28T21:25:00.002-06:00

Kiera seems much better. She's off her Ketamine (a horse tranquilizer by the way), and has been improving since passing a blood tinged mucous plug on Wednesday. She still has some weaning to do on her Terbutaline, Ativan, and Fentanyl before we can take out the IV's. The rest of the meds can get weaned at home. She's coming down on vent settings, so hopefully we can attempt putting her back on the home vent soon. The big two will be to see how she does without the Terb and to see how she transitions to her home vent. I think with any luck we should be able to get her home by Thursday. That's at least the goal. She's awake and pretty pissed off about being in the hospital. She cries on cue every time I enter the room. She's pretty weak, but it's hard to tell how much of that is the Terb. It may take a few weeks for her to get back to her crawling and cruising self, but I think she'll do best with that at home. She was pretty cute Thursday when I brought the boys in, and she tried to play ball with them. She definitely lacks her former coordination, but she's determined. Yesterday I laid the ball on her legs and she would kick it. She thought that was pretty fun.

Breaking News: Kiera's poops 2/3 her birthweight!

2009-03-21T01:42:00.002-06:00

Okay...maybe it's the deplorable state of my TV shows lately, but this I found entertaining. Kiera's bowels were stopped up because of her meds, so we were all thrilled when they started moving again yesterday. The day nurse was so excited to report to the other nurses that there had been an "explosion." To top it off, tonight the nurse told me, after another explosion, that her diaper weighed 422 grams. It occurred to me...hey wait...didn't she weigh that much at birth? No, no...it was 680 grams a birth, silly. I am saddened now that I haven't been weighing her diapers regularly. I am sure one of those home explosions, or diapers ignored by daddy till mommy gets home, must have hit the record breaking BIRTHWEIGHT DIAPER, and we missed it! How could we have fallen down on the parenting job so completely? What a missed opportunity for a scrapbook page! An event that so few cherish or even achieve! Why...I'm sure there must be a Hallmark greeting card to celebrate such an occasion.

It is possible I have lost my mind.

"You didn't see anything...it was the cat"

2009-03-21T01:17:00.004-06:00

This one is the wallpaper on my desktop and just cracks me up. Funny that she thinks mommy's piano is forbidden fruit. Her red one holds her attention for a while until the big one catches her eye.

The best SMILE picture that gets me through the day

2009-03-20T18:13:00.007-06:00

This is the picture I have framed on my fireplace mantel that keeps me going every day. Hopeful Kiera will get to wake up tomorrow and flash me one of these smiles. My realtor wants me to clear my mantel for staging the house, but how can I possibly live without this picture on display? I know it's really that they just want my house empty so it shows better, but darn it...I just need to pray that the right person sees it who can sift through the noise. I've gone about as fer as I can go.

Some happy pics instead of pics of what Influenza A looks like in Kiera.

2009-03-17T21:20:00.007-06:00

Well, I don't have a pic to post, but most of you probably wouldn't want to see it. Here are some cute ones I had on this computer- not my favorites- but they'll do to lift the mood. Kiera tested positive for Influenza A (even though she had a flu shot this season), and her lung culture showed her old friend serratia. We had an eventful weekend. She stayed on the anesthesia ventilator until Monday afternoon, and is now back on the 840 vent but still sedated and paralyzed. She's back to the IV tree of about 7 or 8 IV pumps. She's not fantastic yet, although her left lung has opened back up a little. She's still on a rate of 40 and 60% oxygen. She's got a central line in now, done under anesthesia, for her antibiotics and started appropriate antibiotics for the serratia yesterday. She's getting fed a very teansy weensy bit to try to get her gut moving again. To add fuel to the fire, I think I have the flu now too. I stayed home today in order to rest and try to get well. I couldn't get into the doctor, but will try tomorrow. At least Kiera was sedated all day, so she probably didn't notice my absence. This is very unreal. We've been babied since October and are out of practice for this kind of worry again. I just have to keep looking at pictures of her smile.

Kiera's left lung is collapsed

2009-03-15T12:40:00.002-06:00

I guess after her ultrasound today, they have determined that her left lung is actually collapsed. They have put in a drain to drain off fluid from her chest around the lung to help it open up. They are also lavaging and suctioning her lungs to try to get plugs out to open it up. So she continues to limp along on her bad lung.

On the good side, her blood gases are good, and she still has negative cultures. She's satting okay and is comfortable, of course, since she is totally sedated. The pulmo and intensivist are brainstorming over treatments to open up her lung. She's on steroids and will start her mucomyst and pulmozyne to try to break up mucous plugs. We'll see.

2009-03-14T17:16:00.002-06:00

Up to the MINUTE news: Kiera seems to have built a tolerance to her albuterol and overnight has developed a huge pneumonia in her left lung (which is normally her GOOD lung). Her left lung is pretty whited out on x-ray, worse than I have ever seen it. She has been put on an anethesia ventilator for a few days which is a VERY UNUSUAL procedure. The doctor said that "Maybe one kid every year needs this." Makes sense that that ONE KID is MY KID. We are hopeful and happy that the doctors are taking charge of the situation. She will stay sedated like this for days, probably. She also just started a blood transfusion because she's anemic. The RT joked with me that she needs the blood because she has started matching the sheets. We did another trach culture (an N-Bal) and will see if anything grows out. HOPEFULLY this is a bacterial pneumonia that we can treat. Keep praying. She's in a pretty tough spot right now, and we are very scared.

Slight freak out, but doctors are reassuring...(AND "The Watchmen" is NOT a kid or teen friendly movie!)

2009-03-14T09:56:00.004-06:00

Kiera (and thus, her parents) had a rough night, and is sedated and on paralytic right now. We were both really scared that we were back in "coma-land" and both had bad dreams all night. I woke up at 6:30 AM and couldn't get back to sleep, so I just came in to the hospital and caused confusion in those who have never seen me before noon, especially on a Saturday. I think they thought I might react to the sunlight like a gremlin or vampire or something. :) Anyway, I told the doc that we were afraid Kiera might die, and she said that she is not at all worried about that and that she would tell me if she was. So, the good news today is that her blood cultures seem to still be negative on the current antibiotic and her CRP levels are down which means her body isn't having to fight infection as much as before. She is also getting full feeds right now. She is a little anemic and may get a blood transfusion, which may help her respiratory status. We'll see what Dr. Glasser thinks when he comes in. She is back on her pulmonary hypertension meds, and right now she isn't running any fevers. So...I'll just dig my feet in and keep trudging along till we get her home.

Now for the most important update:

DO NOT TAKE CHILDREN OR TEENAGERS TO "THE WATCHMEN"!!!!!

Jer and I went to see "The Watchmen" last night, and I knew it was based on a "dark" comic strip, but I expected "dark" like "Batman Begins." We did not take our 17 and 15 yr olds, mostly because of their grades, not because it ocurred to us that it might not be appropriate. This movie contains male frontal nudity, sex, F-words, dismemberment, a violent rape scene, women beaten up, and gory violence. It is VERY ADULT in content. It is an unusual movie, but was not at all light hearted or entertaining (which we had hoped for to de-stress a little). We would have been better off at a drama than this movie. I had to turn my head from the screen a few times, and two couples(of maybe 12 in the theater) left before the movie was over. I normally don't get myself in a tizzy over movies, but I feel it's important to make sure you know what you're getting into on this one, before you end up sitting there with a teenager (or worse-a younger child) and having to decide whether to stay or go and what kind of talk you'll have to have on the way home. Stay home and watch "The Incredibles" again, and enjoy yourself.

So much for a night out of entertainment to take our minds off things. Wish I'd gone to see "Race to Witch Mountain" instead.

Surgery is over, Line is out, Kiera is sedated...

2009-03-13T15:51:00.002-06:00

After 2 or 3 postponements for emergency surgeries for other patients this morning, Kiera finally had her surgery to remove her central line in her PICU room instead of O.R. around 2:00PM. She's sedated right now and doing okay although I wonder how long her jugular I.V. will stay in for her antibiotics. The surgeon confirmed that her veins are pretty much shot leaving her very few choices for I.V. locations. They are watching her closely to make sure she doesn't get septic. It sounds like they may keep her sedated for a few days, but I need to talk with the intensivist still. She'll also be going back on her pulmonary hypertension meds (viagra) which she has been off of since June, I think. I don't know yet how long she'll be in, but I would guess 5 to 12 days still, especially now that we no longer have the option of treating her with I.V. drugs at home. We also need to see if she starts doing better. She definitely was still spiking temps this morning and having weird respiratory problems, so we'll want to get her back to baseline before running her home. Good news is that yesterday's blood culture was negative, so I think that means the current antibiotic is working. She was certainly feeling well enough today to push us out of the way when we came between her and her TV.

Kiera's having surgery in the morning...

2009-03-12T22:40:00.003-06:00

Okay, here's a quick update from Kiera's hospital room on my ridiculously SLOWWW laptop. I have spent the last hour just getting to this spot. Kiera's on the 840 hospital ventilator now. Kiera's port-a-cathetar has resulted in a staph infection in her blood, and it has drifted into the atrium of her heart. She's scheduled for its removal in surgery tomorrow at 7:30AM. She's continuing to spike high fevers, and at present, is not responding to fever reducers, so I have been sponging her down, and the nurse is looking for a fan. Her echocardiogram this morning showed 2/3 systemic pulmonary pressures, so I am worried that maybe her pulmonary hypertension is back. Hopefully, it's just a side effect of the drifted cathetar, but I guess we'll see on the echo after it's removed. She's also on continuous albuterol nebs, a versed drip, and now intermittent doses of ketamine. She's pretty lupy, but happy at the moment with her Elmo video, "What Makes Me Happy." Hopefully, after the line is removed, we can get rid of this blood infection, and get her home. We just have to pray they can get a good peripheral IV in tomorrow, and that it stays in long enough for the antibiotics to take effect. So far, the antibiotics up until now don't seem to have made a dent yet.

I'm freaking out a bit, and sad to be in again, and for what looks to be a significant amount of time. I'm sleeping at the hospital tonight so I won't miss the surgery. We all know what a great morning person I am.

Please pray for everything to go well tomorrow.

Therese

Kiera in Hospital...I'm pooped.

2009-03-08T23:40:00.002-06:00

Sorry I can't stay on long tonight. I really feel totally and utterly drained.

Kiera had to be admitted yesterday afternoon after a fever induced seizure at home. She seems on the mend, but we are waiting on the results of her EEG and blood and trach cultures. Hopefully, once diagnosed we can treat her at home. She is definitely unhappy to be back in the hospital. She woke up there after the ambulance transport, looked around, and just cried and cried. The doc said the seizure wipes out their short term memory, so she probably didn't remember the event and didn't even know why she was there.

In addition to every other stressor in my life, I got hit by a speeding camera on the way home from the hospital tonight. I was probably going 40 (while lecturing a teenager on why he should do homework) in a 35 that I believe is only 35 in order to trap people into collecting money for the city. I want to just hand them my arm and dare them to get in line and take it through a vein.

Then I came home to a scorched teapot of cider I had left on LOW for showing our house and now have a smoky burnt smell to deal with. At least my brother caught it when I sent him earlier, and I still have a house...and a brother. I'm sure that would have mixed well with the oxygen tanks.

I am so done.

Therese

Chipping away at that ventilator...

2009-02-13T12:44:00.003-07:00

Kiera had a great day at the pulmonologist and GI docs today. Kiera colored some valentine's for her doctors and was all dressed up, in fact, in the same t-shirt I bought for last valentine's day. It actually fit better this year because she isn't puffy from steroids. She did show a little mid-riff though. The hussy. We reduced her ventilator rate to 12 from 14. When she gets to 8 we can start trying CPAP, which looks like spring. When asked I have been telling people she might have her trach till she's 5 yrs old, but the pulmo thinks she might even get it out by the time she's 4. I asked because I wanted to see if I was being realistic or not. Her GI doc was pleased and says kids after 2 usually grow about an inch or 2 each year and 2-4 pounds and that we don't have to see him for 6 months. Kiera's playing with her toy kitchen right now and eating the play food. Oo...gotta go. A friend's here. I'll write more later.

Descartes, "I think, therefore I am...a poodle."

2009-01-27T16:50:00.002-07:00

About 10 wks old. Now you can see his pretty face. :)
He really LOVES that bear.

Kiera's Playhouse (or Thank God for craigslist!)

2009-01-25T10:55:00.004-07:00

I mostly wanted to post these pics as a Thank You to the woman who sold me this playhouse on craigslist. Kiera LOVES it, and it makes it so easy for her to play outside.

She is obsessed with opening and closing the shutters. What a nice day yesterday.

New Year 2009 pics

2009-01-12T15:41:00.009-07:00

Waiting New Year's Eve for Daddy to come home from work. We were going to go play at the restaurant, but Kiera wasn't feeling well.

Fell asleep before Daddy came home.

First Wagon Ride. Jan 2009

Kiera loved going forward and backward on the driveway with Grandma.

"Do it Again!"

Kiera and Uncle Chris. "Gee, that guy looks an awful lot like my Daddy."

Daddy and Chris at Independence Grill.

Kiera's Great Expectations Day!

2009-01-07T10:09:00.002-07:00

Wow! Today marks one year at home for my 2 1/2 yr old! What a year! She's come down on her ventilator rate to 14 from 26, and today her 02 is at 2 1/2 liters. We've only had to re-admit her to the hospital 6 times this year. 3 were pneumonias, 2 were surgery or procedure related, and 1 was that first night home when we called paramedics and Kiera was blue and not moving....incidentally worst night following our best day. Thus, the title of this entry is explained. Our first day home was the very best day, and our first night was an absolutely horrible nightmare of a night. When I look at her happy and playing today, I can't believe that I ever saw her the way she was that night. So, I can't help having such a bizarre reaction to this anniversary. I totally can't believe we have gotten through a whole year of mostly interrupted nights and a whole year of carrying the heavy ventilator up and down the stairs twice a day and a whole year of going through an equipment checklist in my head before getting in the car and a WHOLE YEAR of bagging and trouble shooting and overcoming ridiculous scenarios that one only sees in medical TV dramas.

We look forward to what our new year will bring: Fewer hospitalizations, we hope. Potential weaning from the ventilator to CPAP in the spring. Maybe a 3rd birthday not on the ventilator? Kiera walking without the aid or support of furniture? Maybe Kiera talking, laughing out loud, or eating?

We are so thankful to have had the strength to persevere this long and to have had a chance to experience all the good things Kiera has brought to our lives. Every morning she kisses each of us and then makes mommy and daddy kiss at the top of the stairs before we go down, and every night she does the same at the bottom of the stairs before we go up to bed. What a kid!

Some Christmas Pics

2008-12-31T01:09:00.009-07:00

"Kneeling before the alter?" Oh dear.

Really motivated to get into that cabinet.

No, thank you. I prefer cheetos. I feel this bowl makes a nice hat though.

This hat works for me.

I am so much cuter than my parents.

I just love being the show.

My favorite present- a Signing Time book.

Second Spontaneous Decannulation! Wheee!

2008-12-29T20:25:00.002-07:00

So I ran some errands today while the nurse was here, and Kiera figured out how to decannulate (pop her trach out) a second time. If you recall, I was the lucky care giver the first time. Everything resolved okay. Thank goodness for my experienced nurses! Zane was a great assistant in the crisis and held her trach in place while the nurse was attending to her. It freaked me out a bit to know I wasn't here for it, but I'm grateful that I have competant people so that I can get out once in a while. It's such fun having a baby that can go from happy go lucky, fun loving, 2 yr old, to life or death action in a matter of seconds.

Kiera's making me laugh right now. She's sitting in her play area getting into everything. She's currently playing with the Playstation controller. She found a way to read her book by turning pages with her hands AND feet. Now she's trying to involve her brother in her mischief. She's BUSY, BUSY.

2008-12-21T13:12:00.004-07:00

One can't help but notice the resemblance to a black French poodle of our puppy's namesake, Rene Descartes.

Latest fun pictures

2008-12-19T19:05:00.010-07:00

"Monsieur Descartes Loren Wright" 5 1/2 wks

Puppy eating. "I'm awfully hungry, Momma."

Kiera eating. "Mmmm, that looks good. I'll have what he's having. What's in it?"

Pet the puppy.

Kiera helps decorate cut out cookies. She "picked" this one just for you.

"It won't bite back, Kiera."

Kiera and big brother, Zane, decorating cookies.

Nan's hat- "I make this look good, yo."

Kiera holds her cousin.

New Arrival!

2008-12-19T08:10:00.004-07:00

My darling husband got me a standard poodle puppy for Christmas! His name is Mister Descartes Loren (and I'm considering the last name Squarepants). He's French of course and very smart, so I thought a French Mathematician and father of Cartesian mathematics was appropriate as a namesake. As Descartes would say in his Discourse on Method, "I think, therefore I am (a poodle)."[sic] :) His middle name is a tribute to Kiera's pulmonologist. Jer made me laugh last night when he said that Descartes is "graph paper trained." AWESOME!

Anywho, the funniest thing last night was when I fed Descartes, and my lovely Kiera with her oral aversion and unwillingness to eat anything other than suck cheetos and doritos thought that puppy chow somehow looked appealing and was perfectly happy to attempt eating that. :) Don't worry, we caught it before it went in the mouth. So I had to get some of her meltable sweet potato puffs and put them in a bowl so she could eat with the dog. She at least licked them and played with them, although they don't have the intensity of cheetos or puppy chow, so it left her underwhelmed. It reminded me of something I think her speech therapist told me about a kid starting to drink by copying their dog and only wanting to lap up milk from a bowl. Who new that getting a puppy was sound feeding therapy technique?

I'll post pics later today.

I'm too cute to take a nap, Mommy.

2008-12-17T10:38:00.002-07:00

So Kiera was just cracking me up yesterday. She refused to take a nap when I put her down at 1PM until she finally crashed at 4PM. Previous to putting her down, she was making it quite difficult for me to run the restaurant payroll by "hardlining" my computer while I was working. (She likes the light up "off" button.) She grabbed the mouse and logged me out of the payroll program at one point. She grabbed the keyboard to change employee data. She tried to eat someone's child support paperwork. She's also a little funky lately and thought she'd like to projectile vomit a few times mid payroll...just to keep me on my toes. Very fun. So I put her in the pack 'n play for her nap. She then proceeded to play a game we call under over. She stood up in the pack n' play holding onto the changer and peeked at me under the changer through the mesh and then over the changer as best she could being a little short. Of course, she just flashed that big smile every time and did this over and over and over and over.... Soooo cute. Then she started blowing me kisses. Kiera doesn't just blow them...she chucks them at you. Her blow kisses could knock you over. Of course, she kept smiling still with a sweet, "I don't want a nap, mommy," look. Then she started fingering "Itsy Bitsy Spider" to get me to sing and play with her. She signed,"love" and "mommy." She gave me a kiss when I came over and laid her back down again. She definitely was pulling out all the stops.

4PM...she finally fell asleep. I win.

Did you get a load of this...?

2008-12-14T22:47:00.003-07:00

So, the government is mandating a change to ALL asthma inhalers! Just saw this on KOAT7 news tonight. Of course, the change is being made so that the propellant is "ozone friendly." Since there will be no generic it will increase costs of meds for bajillions of asthma sufferers. This is the crap that happens when we let the government run health care!!!! I hope the meds still work the same. Of course, this is a maintenance med for for many people that they can't go without, so the difference between a $10 and a $40 co-pay is not just $30 but probably $60 more a month or $720 more a year! It's all going to get worse with the incoming idiots in charge. How much do you want to bet they didn't even consult the patients affected by such a change? Forget about choice. Environmentalism is the new mandated government religion to the detriment of the people.

Yeah...Biggest Day so far at Indy Grill!

2008-12-13T10:53:00.004-07:00

We FINALLY got our liquor license on Wednesday, and Friday was our biggest day so far! Keep sending your friends and family in! When you go out to eat, think of Independence Grill! We are at 6910 Montgomery Blvd NE at Louisiana and Montgomery southwest of TJ Maxx and Shoes on a Shoestring. website is http://ABQburger.com and phone is 505-837-BURG. I assure you there will be something for everyone on our awesome menu. Don't forget that PICU and NICU staff will get a discount. Just bring your badge! (If your server seems confused ask for Jerry :) )

Kiera is doing GREAT this week! She is into everything! I got her this little push and ride toy at Other Mothers about a month or two ago, and Thursday she used it to walk across the room. She has also been trying to walk with her therapy walker, although it is a little more cumbersome. Maybe she'll walk for Christmas! What a concept?! Her first Christmas in 2006 I hoped she'd be home for Christmas. Her second Christmas in 2007 I hoped she'd survive till Christmas, and when she started improving that she'd be at least back in Albuquerque by Christmas. I actually get to have a Christmas wish this year that doesn't involve life or death or hospitals. Woo Hoo!

She is starting to try to make sound past her trach cuff...kind of an "Ahhhhh." She also interacts with Steve on Blue's Clues. When he asks questions, she blows kisses as her answer. It's so interesting. I wonder what her kiss is communicating in her world. She had many play dates this week. My neigher brought Audrey over to play, and my brother brought Kiera's cousins over twice! She has also been playing with her brothers which she really loves.

I am also getting NURSING for Christmas! Yippee! I have 3 more wonderful PICU and NICU nurses signing up to come help us out. I am so excited, especially after having to be up at 2:30 am, 3:30 am, and 6:00am this morning before my hubby handled some early morning cares so I could sleep a little longer. Thank God for coffee. :)

Gotta go. Something Stinky This Way Comes.

Dear Santa, All I want for Christmas is Cheetos!

2008-12-10T13:13:00.002-07:00

And Signing Time videos. :) Kiera has started enjoying licking the cheese off cheetos. It's about the only food she'll stick in her mouth. She licks them clean. Ever seen a white cheeto? Anyway, it's cute and makes her (and mommy) feel like she's eating with us. She only goes through about 4 in a sitting, but it's at least something. It reminded me of the year that all my sister wanted for Christmas was Easy Cheese. They must be of the same cloth. :) Funny thing...I had a Cheetos bag with nothing but Cheetos dust on my counter at Thanksgiving, and someone "helped" me without my knowledge by throwing it out. I hate to call all my family to find out who threw out Kiera's cheetos dust, but for future reference....visitors in my house must not throw out FOOD in even the weirdest form. Remember...one person's trash is another person's treasure. Kiera treasures her cheese dust. :)

Therese

Oh my Gosh...

2008-12-05T22:24:00.002-07:00

Okay, so I know I don't have any pics posted, but there is just so much to keep track of right now. I'll get to it. I promise. I have some cute ones from Thanksgiving and of Kiera with the new puppy we are getting for Christmas. I just have to retrieve them from my camera.

I just have to share a surreal moment I had tonight. I was driving home from Socorro past Presbyterian hospital around 9PM. They light up the hospital with luminarias every Christmas as they did Christmas 2006 and 2007. As I was driving past I thought..."Look...the hospital...and Kiera's not in it."

What a strange moment. It's weird when you realize how different one event has made your entire world view. I had likely driven past the hospital for 19 holiday seasons previous to 2006 and never given the building, its occupants, or its decorations a second thought. For two seasons, 514 days, every time we passed we waved to Kiera, said hi to Kiera, commented that that's where Kiera was, etc. The building has come to be a huge presence, a constant reminder of Christmas past, present, and future.

Even though we were there today for a Dr. appointment, and we are constantly in and out, this image of the hospital was the most poignant. This view is the one that makes it clear that we will forever be emotionally involved with this building. It's where everything happened. We have changed restaurant businesses, we have moved to different houses, I've taught in and attended different schools...but this building is different. I can visit other buildings from my past and remember days gone by, but seeing this hospital lit up at Christmas can actually transport me to that place in an instant. I'm pretty sure it always will.

Funny thing...we put up our Christmas tree, and I was so excited imagining how Kiera would react when she saw her first tree. So I put her on the floor by it. She lightly grazed her fingers over it a little touching some ornaments and needles (it's a fake tree). Then the door bell rang, and I answered. About a minute later I look back at her, and she has crawled to the open bag of clean diapers and is chewing on them. Diapers- 1, Tree-0. I might as well decorate the tree in diapers. It would hold more appeal.

Here's to hoping this will be the first Christmas with Kiera not in the hospital.

Therese

Yet another grocery store clerk traumatized by Kiera Rose

2008-11-20T18:27:00.002-07:00

So, I ventured out, and yet again discovered a weak link in our travel plans. :) I really needed to get Kiera's meds and groceries for Thanksgiving, but won't have nursing again till Monday. I had an "evil plan" that I could do it myself. Luckily due to a SNAFU and missed bus I ended up with a stepson assistant. Kiera with all her equipment pretty much fills a grocery cart. It was helpful to have The Boy to push another cart and fetch things. Kiera really enjoyed looking at everything. She was all smiles. She liked the ride in the cart, too.

So we did pretty well until we got near the end of our trip in the produce section. Kiera's vent circuit popped off and hit the ground just right so as to break off the sensor tube from the circuit leaving a tiny whole for lost pressure and volume. I sent The Boy out to the car to get the bagging tank just in case while the produce clerk helped me try to tape the broken piece onto her circuit to stop the leak. Voila! The Medical Tape Corollary to the Duct Tape method of repair was a success. Next time, I will carry a spare circuit in the car. I had no spares with me since this had never happened before. The clerk was very nice and also informed me of the location of a phone that can dial out. Apparently not all phones in the grocery store are capable of dialing out and the scanners cause dead zones for cells which is good to know in an emergency. Thank you, Don, at Smith's grocery store.

FYI- Kiera has started experimenting with standing without support. She tried it last night and tonight. She is so pleased with herself, and we clap together afterwards. Very cute. I think she is also cutting some 2 yr old molars and seems pretty bothered by it.

Therese

Indy Grill Dress Rehearsal

2008-11-16T23:03:00.010-07:00

It was so much fun seeing our restaurant get born tonight. Thank you to everyone who helped test our crew out and see about working out kinks. It takes a lot of work to turn a restaurant into a finely tuned machine, so we appreciate your patience and support. I am so grateful for all the help we had cleaning, painting, wallpapering, decorating, refinishing, etc. I was also thrilled to have a nurse today to help so that Kiera could attend, but I could focus on all the guests a little better. I could definitely tell the difference between tonight and other times when we go out and I need to stay in tune with how she's doing better. She was so cute. She tasted a little berry mini-milkshake and seemed to like it. She also tried guacamole and sour cream. Not big on the sour cream but guac seemed tolerable. Kiera really seemed to enjoy herself, and liked all the lighting. Since I knew it might be a long evening I brought the pack n play, critical books, and a few toys, but my real guilty confession is that I brought the travel DVD player and her Elmo "What Makes Me Happy" DVD for the predictable evening meltdown. Of course, the DVD should be re-titled "What Makes Momma Happy." She camped out in the playpen and watched TV. I wonder if she sees the TV people from Poltregeist? She's her Daddy's girl. I recently discovered yesterday that the endearing sign I thought was Kiera reaching for mommy may in fact be a sign for the remote control. Hmmm. I admit defeat. The TV has won. "Go toward the light, Carol Ann." Or is it "DON'T go toward the light?" Darn it...I can't remember. Come eat lunch or dinner opening Monday 11am. November will be a special month for Presbyterian Hospital PICU and NICU staff showing badges. You're basically family, so come in and get your family discount during the month of November. Ask for Jerry. Cheers!

Here are some pics.

Independence Grill Opens Monday!

2008-11-15T22:07:00.002-07:00

Yeah! Come visit our new restaurant, Independence Grill! We open Monday, although it is a soft opening. Our Grand Opening will come as soon as our liquor license comes through. In the meantime, we serve Jones sodas which are really fun and unique, and the food will blow you away. In addition, our place is so pretty. I love the mood and atmosphere. We can't wait to share it with you. We are located at 6910 Montgomery Blvd and the phone # is 837-BURG. Come get the Best Burger in town! Tell your friends!

Up Day...

2008-11-13T20:31:00.002-07:00

Kiera is back on her rate of 16 with O2 at 3liters and still on 4 hour nebs and steroids. She made me laugh this morning at around 6am when she decided to be UP and stood up in her crib and started removing all the rail guards and tossing them. In the silhouette of the closet light, her hair was standing on end in a sort of "Flock of Seagulls" updo. When she does this, she often whines and grabs her suction catheter from the changing table to indicate that she would like some immediate suction assistance from her tired mother.

Another cute thing today...the nurse French braided her hair. It is so cute! Kiera has also developed a taste for Nacho Cheese Dorito's. She likes to lick the cheese off adult fingers. It's a start at least. She does open wide. :)

Therese

Up and Down, See Saw

2008-11-12T13:55:00.002-07:00

I used to think of Kiera's health as a roller coaster ride, but sometimes it's much more like a see saw- so gradual change, just up and down.

She seemed to be improving on Monday and back to her rate of 16, O2 at 3liters, and 4 hour nebulizers. Then yesterday she was pretty sick, back on 3 hours nebs, rate back up to 20, O2 at 4liters. Today, so far, she's back down to a rate of 18, with 4 hour nebs and O2 at 3 liters.
This, of course, is in addition to some diarrhea and diaper rash and lots of secretions to suction.
But, I hate to commit, she seems a little better today.

I am looking forward to more nursing this afternoon, Thursday, and Friday, so I will be able to help finish setting up our new restaurant to open on Monday! Yeah! (on the nurse and the opening.) Our restaurant is Independence Grill at Lousiana and Montgomery (6910 Montgomery). We will be open daily for lunch and dinner, and the restaurant website is http://ABQburger.com. I hope you will all come. The menu is fantastic featuring American Kobe beef burgers at a great price! I am totally in love right now with our prime rib with our chef's special green chile en jous. And for dessert lovers, I picked them personally with all my sweet teeth. (Just ask my dentist)

I also want to thank my guardian angel mom, Shannon, for the video baby monitor. Once Kiera is well, I will start trying to sleep in our bedroom instead of Kiera's and see how it goes. It's all hooked up, and all I need to do is get Apria to send me a louder SAT monitor.

Love,
Therese

So far so good...we've kept her home

2008-11-09T18:30:00.002-07:00

Another quickie: Kiera's down to neb every 3 hours instead of every hour like yesterday, and her O2 is down to 3-4 liters. I dropped her rate to 22 (I had had to increase it from 16 to 30 to get her through being sick and keep her home). Now she's getting more puffs of Symbicort, still getting the steroids, atrovent is up to every 6 hours instead of every 8, and we dropped her mucomyst. She's still pretty junky(i.e. phlegm in trach tube) and gets kind of lethargic when she's due for Atrovent, but sheactually sounded more clear last night at bedtime than she had.

This all happened with very poor timing. She just changed diets Friday after her GI appointment. She has had some funky GI effects that I think are from the diet change, but I think the respiratory fallout is a separate thing from a virus probably. She's been gaggy because I think it takes her longer to process the new food, but she could also be gaggy because of the "junk in her trunk" (again- phlegm in her trach). We also got to just start her Vest treatments up again on Friday because we had been off for 2 weeks for her to heal from surgery. Therefore, it's hard to tell if the junk is from no Vest treatments or a virus, although the runny nose leads me in the virus direction.

Thank you for joining me for amateur medicine 101. :)
Gotta go...Kiera's "calling."
Therese

Oh-P.S.- found the camera under her other equipment bags. It was here the whole time, and we could've gotten more Halloween pics. I may just have to dress her up and get a few more. :)

Kiera' caught a cold at the doctor's office

2008-11-08T11:46:00.002-07:00

Kiera must have a cold, and it's been throwing her for a loop. I've been giving her nebs just about every hour since yesterday afternoon, and we started steroids this morning. It's been a long night. Hopefully we can keep her out of the hospital today. We'll see.

Therese

Kiera playing Rock Band and using grocery cart "walker"

2008-11-03T16:22:00.008-07:00

This isn't how she uses the cart loaded up, but we were just practicing.

Braving a transfer from the cart to the drum set.

Kiera likes to Jam! She uses chopsticks because there are now little teeth marks in our drumsticks. We had to give her decoys.

She is totally a hair band rocker chic! She loves to watch us play and join in. Sometimes she drums on her tin (leftover from Christmas popcorn) or plays her piano, tambourine, or maracas.

Can you sign, "Drama Queen?"

2008-11-01T20:32:00.003-06:00

Our family had some drama tonight at an un-named alternative grocery store which I think has
pretty much scared the crap out of a whole bunch of grocers. Jer was
working today, and he had previously asked them about getting one of
their old gray kiddie shopping carts for Kiera to use with her
ventilator to facilitate learning to walk. They were going to sell me
one for $40 because they had upgraded to new prettier ones, and I
guess they cost $120 new. I have no nursing lately, so I was faced
with the option of waiting till Tuesday when I have a nurse, or
packing Kiera up with my 2 teenagers and trekking to the store. I
rarely do this since they are not well versed on how to help in an
emergency while we are driving, so I would have to pull over for
anything more serious than reconnecting her ventilator to her trach.

Anyway, I risked it and took her out thinking she has been doing
really well, and we wouldn't have any problems. You can probably
foresee that Murphy's Law will again rear its ugly head. Part of me
thought that having Kiera with me might charm them down on their price,
too. Who could say "no" to that smile?

Anyway, I guess Kiera had a huge plug she was trying to cough up, and
she started desatting right after we got in the store to look at the
carts. So here we are at a booth at the front of the store by the
registers. I suctioned Kiera 3 times, bumped her O2, took off her shoe
to make sure the SAT probe was reading accurately, and finally sent my
oldest to the car for the bagging tank. Now we are bagging her in the
store in front of every shopper who's checking out. I had one stepson
bagging her while I did a ventilator check, and no matter what I did
(changing tanks on the vent, changing tubing, etc) I could not get her
SAT's to stay up on the ventilator. So I gave her a Xopenex inhaler
treatment which didn't seem to help much and kept bagging while one of
the boys called dad to come help us bag her all the way home. I didn't
feel safe about driving with them bagging.

So, while waiting for daddy, I still had to page the manager back to us
to discuss the shopping cart purchase. Interesting enough, the white
look on his face as I explained that we were having a minor medical
emergency, that my husband was coming, that no, we did not need him to
call 911 but that I had a phone if I decided to go that route, and
what I'd really like to decide is whether he'd like a check or charge
card for the kiddie cart caused him to allow us to just take the cart
free of charge. :) I think what he wanted to have follow was, "Just
as long as you don't come back to freak out my peace loving customers,
lady."

So all in all, the trip was a success. We are back home on the home
ventilator having gotten some thick mucous out and run some extra
nebs, and she seems much better. She still has an elevated heart rate and temp, but is getting feisty again. I think she just didn't take kindly
to having been woken up from a nap for this outing. Of course, I
wasn't too keen on being up with her from 1:40-5am this morning
either...which is what I told her. I think we have an understanding. :)

Therese

Happy Halloween, 2008!

2008-10-31T21:45:00.007-06:00

Today was so much fun, I almost cried. This was Kiera's due date had she gone to term, and this was her very FIRST Halloween at home and not in the hospital even though it's her third. A little SNAFU had our camera left at work, so these are pics from my brother's camera, and I have a few on my cell phone camera once I figure out how to get pics off it. I just had to include the pic of my nephew scrambling up the stairs with his dragon tail wagging. Too cute!

We went trick-or-treating with Kiera's cousins. Daddy was Winnie the Pooh, Mommy was Eyeore (It looks more like Eyeore when you see my tail on the back), and Kiera was Piglet, The ventilator was cleverly disguised as Tigger (her big stuffed Tigger riding the stroller canopy). The boys dressed as Halo II military type characters. It was cute...they did our recon and scoped out houses ahead of us. Unfortunately, 3 out of 4 houses in our neighborhood have stairs to their front door, so I often had to hold her pumpkin for her while she waited at the foot of stairs. Next year will be even more fun if she's walking.

Kiera actually sucked on a Dum Dum sucker for about a half a block!!!!!! It was so cute. Later when her hands were sticky from the sucker she tried to blow her cousin a kiss, and got distracted by her sweet hands.

The best part was after we got home. Kiera sat on the floor and started pulling candies out of her pumpkin. It was such a big girl thing to do- especially since the boys(14 and 16) were on the floor next to her sorting through their candy too.

I can't wait to see the pictures.

Love,
Therese