Kiera saw her shadow...6 more weeks of summer for her... Mama needs a spa day.

Doctors are predicting a slow recovery for Kiera and think it may take anywhere from 6 weeks to 3 months for her to get back home. She is currently still sedated, having trouble with blood pressure control and high glucose levels, and still on the ventilator doing none of her own breathing. The assumption is that she has some muscle myopathy from 2 weeks of sedatives and paralytics and is too weak to breathe on her own just yet. They went UP on her ventilator rate today to try to help her breathe off some of the high CO2 levels. The positive aspect of the increase is that at least her lungs are a little less hyperinflated enough to actually do that. Before, they couldn't risk a higher rate. Of course, more support versus less support isn't exactly a green light.

They are starting to ween her fentanyl a little, so she peeked at mommy and daddy a little through very heavy lids this evening and squeezed my hand. She is very drugged though and out of it.  She is only getting a tiny 10cc's per/hr continuous of formula, and her gutt is starting to move gas and other. No real stool yet except a tiny smear last night. Her other drugs to control blood pressure and glucose end up getting increased and decreased routinely as needed, so no real progress there.

I don't really know any other way to say this, but this sucks. Her last hospitalization of more than 2 weeks was for a month in March 2009 with Influenza A and a collapsed lung(see previous blog posts)...BUT I wasn't trying to hold a teaching job then, OR take classes for grad school. In addition, she was already ON a ventilator when we admitted her then, so this is a much more dramatic shift in her status than before. If this takes even the low estimate of 6 weeks from now that pulmo suggests, that will make this a 9 week hospital stay...the result of just a very bad common cold.

So tomorrow, I head to the hospital again and again until my family is home. I'm losing steam, but hoping that Kiera will once again surprise everybody and come home sooner rather than later.

Sleeping Beauty

Maybe Prince Charming will try to kiss Kiera today and wake her up. I will know more after work and modify this post. Her lungs have shown a little improvement yesterday and may be normalizing. It was a significant change after 2 weeks of pretty much worse news than the day before. Her sugars are still high requiring an insulin drip. Last night they thought they might try lifting her paralytic today. Her main problem right is her gut. She hasn't pooped in over a week and her intestines are full of air making her very distended. She looks ready to pop. This may cause problems in waking her if her belly interferes with her breathing. Hopefully, lifting the paralytic will get her motility going again. I wish I could be there when they wake her instead of at work. Thankfully, my mother will be there. Kiera doesn't like coming out of sedation and gets very agitated.

Waiting for Kiera to Exhale (and poop)

Today is the start of week 3 for Kiera in the hospital and week 4 of being sick. She was placed on the ventilator 12 days ago and sedated 10 days ago. She is VERY hyperinflated from breathing too fast for so many days while compensating for being sick. Now her lungs are so sick that she can't exhale all the air in them to make room for new breathes. This is causing a perpetual state of air trapping that will require a long wait to correct. The frustrating part is that she was diagnosed with both rhinovirus and parainfluenza which instigated these problems. These viruses have probably both passed by now, but leave in their wake a dangerous situation for Kiera. In addition, the amount of drugs Kiera is on have caused some ancillary side effects. At the moment, she has not pooped in a week and has become very distended. Her glucose levels are extremely high requiring an insulin drip to maintain, and her blood pressure has been extremely high, requiring pressure lowering drugs. She can't be fed her formula till she poops and can't receive TPN because of her sugars.

So we wait. Doctors say there aren't really any more interventions they can do that aren't being done already. Keep on praying.

Kiera is back in the hospital and on a vent...Crappy 7th Birthday

I haven't posted much since I discovered facebook and went back to work. Life has been busy; but we were blessed with no significant hospitalizations for a few years. This year has been a little bit of a slap in the face. Kiera is currently in the process of her second hospitalization due to illness this year, and is in a very scary place right now. After a 2 week stay with RSV in February, I thought I had seen what would happen if she got really sick. She has been ventilator free since March 2011, and remained off the vent even through RSV.

The winning streak is over. Kiera caught both Rhinovirus and Parainfluenza after 1 week of attending school for the first time. We were so excited for her to be able to attend the sign language academy and looking forward to developmental leaps and bounds. After she got sick, I kept her home for a week, hoping to get her better. When she continued to seem better and then get worse, I took her to the pulmonologist 1 week later, and he admitted her to PICU. Four days after admission she was placed on a ventilator. Six days after admission they placed a central line and put her in a sedation coma with paralysis. Seven days after submission, her food had to be replaced with TPN because she was vomitting. Yesterday, on Day 10, she had to start blood pressure medications to lower high blood pressure (180 systolic). She is EXTREMELY sick. Her lungs are still very hyperinflated and she can't seen to empty them. My sweet little girl had to sleep through her 7th birthday, and I just want to see her eyes open again. I can't hold her while she is under, and I am placed right back where we were the day I started this blog in 2007. Through all of this, as you know, I am a teacher, and this was the first week of school. I have not called in sick. Anyone that complains about teachers around me should tread lightly.

Please pray for Kiera. We want to see her smiling face again, and I can't wait for her to throw breakables off my banister.

Kiera is 6 Years Old Today!

I know I haven't updated the blog in a long time. Since my discovery of Facebook, it became easier to briefly post in that forum, and combined with going back to work, blogging fell by the wayside. That said, Kiera is 6 years old today. It is hard to believe that it has been 6 years since that day that changed our lives. Kiera is still trached and living with oxygen and a g-tube for feedings. She advances in many ways, and still struggles in others. Feeding by mouth  is still experimental...she tastes foods and makes messes but rarely swallows anything. Kiera's sign language is getting better, but we have depleted our repertoire of vocabulary and need to find other resources. Kiera still receives homebound education services from the public school, but is developmentally delayed, and we have her on a waitlist for the ASL Academy charter school. I would like to send her to school, but the charter school seems to be the most appropriate for her needs, and she is 4th down on the list. I think any of the regular public schools would overwhelm her, and frankly I have trouble figuring out the logistics of getting her there and keeping her safe. It is hard to see her peers and children younger than she head off to school, while she waits.

Life has been taking a toll on us these last few years, and I am holding on for an upswing. I cetainly hope it happens soon. In the meantime, we will just celebrate getting Kiera to the 6 year mark. It definitely took a lot of hard work and persistence.

Bronch done, now waiting for Airway Appointment...

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!

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.