"HAPPY" Independence Day!

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!

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)

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!

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...:)

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!

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

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."