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...

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...

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

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"

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!

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

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...

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!

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

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

Closer to Walking...

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

Some 3rd Birthday Party Pictures

Kiera is going for the BIG 3!

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!)

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

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

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,,,

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

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

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.

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

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!

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

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...

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...

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

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....

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!

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...

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