Crossing Fingers

We changed Kiera's trach to her original longer canula trach on Monday, and so far her PCO2 levels have been much improved! 66.8 Tuesday morning and 60 Wednesday morning. (Of course, normal is 41, FYI) We're happy with 50's for her. They also when back up on her steroids...she was down to an every other day dose. So...not totally sure if this will put her in a position to wean her vent enough to get on a portable vent, but I'm encouraged a little. Kiera had an echo yesterday which didn't show much evidence of pulmonary hypertension. They also did a viral panel and trach culture, just to triple check for some unwanted visitor that might be hindering her recovery. She is having a surgery procedure at 1pm today where they will place a Porta-Cath...something she had back in 2008-2009. (see posts in March 2009 regarding infected Porta-Cath, flu, etc). She needs the permanent access in case of other illnesses this winter, and she has had her PICC line in for a month which is just asking to get infected, so the port will be safer. I am hoping they will teach me to flush it, so I don't have to rely on home nurses, but we'll see. Kiera seems stronger each day, but is still working to be able to stand on her own. Yesterday, she signed some words that she read while I was reading with her. "Farm" and "Cat." She is so smart and wants to do so many things. It is very hard for her to be pent up like this.

LIMBO Rock

We are a little down and out after Kiera's care conference today. We thought we were planning discharge, and it seems we are in somewhat of a LIMBO state, and doctors are concerned and "puzzled." Kiera was ventilating better two weeks ago and seemed to become worse and a little unpredictable in the last week. The doctors are concerned that there is maybe more to her problems than the initial viruses. Her PCO2 levels have been 80's to over 100 and with no obvious case. We have a few action plans in place and started with a trach change to a larger trach today, but the concern is that there is too much dead space in Kiera's lungs and that maybe she is becoming unventilatable. Her settings have increase to levels that she cannot come home with even on a home ventilator. They even threw around the words "lung transplant" again even though we "aren't there yet." I am hoping for some miracles. They cultured her again today to see if they have missed some bug. They will echo her tomorrow to see if pulmonary hypertension is back and warrants sildenafil. They will CT her to try to get a better picture of her pulmonary tree in a few days. They are wanting to put in a porta-cath again, which would require surgery. etc...etc...etc.... Too many variables to play with and wait and see if they make any difference. On the plus side, Kiera is trying to get her strength back and sitting in a chair for longer periods of time to play. She is clearly bored out of her mind. She is trying to stand, but still can't stand on her own or with a walker yet. We took her on ten laps around the unit in a wagon today, with the big ventilator in tow, as well as an entourage of RT trainees. It was a little comical to have 10 people in step with one kid on a vent. Unfortunately, we didn't have the all clear to go outside, so the wagon ride was the highlight of the day. I am having one of those days where I really wish I could just have the everyday struggles of a soccer mom. Some things are just too much. 8 weeks at this stage in the game with no end in sight is not where I thought I'd be 8 years ago. Tomorrow is another day.

Slow Recovery

Kiera is feeling better and sounding better, but has a long road ahead. She has critical care myopathy, basically extreme muscle weakness. She is still on the ventilator and working hard to get back her strength and dexterity. She basically has to re-learn how to sit, stand, walk, use fine motor skills with her hands etc. To give you a good descriptor, Yesterday we were excited because she itched her now with her own hand instead of just rubbing her face against a pillow. She also put weight on her feet, with two people holding her up to stabilize her. It is hard to say how long this will take untill she is well enough for discharge. In the old days when she was on a home ventilator, I think we could have gotten discharged sooner, but now that her baseline is more advanced, it will take longer for her to get back to it. That's all for now. I am definitely tired of the daily hospital visits and appreciative of the fact that when she was inpatient for a year and half when she was born, I didn't have to teach school during that time. The fact of the matter is that employers and others not living this kind of stress don't have the endurance to keep being supportive for the long haul. They see me at work, but most probably have no idea that my daughter is still sick. I doubt any of them have even been appreciative of the fact that I haven't missed a day of work yet. They really don't have a clue how lucky they are to have me. To them, I am just a reflection of my students' test scores and a means to their end.

Sleeping Beauty gives little girls false dreams, but not how you think.

So I have come to a recent realization. The problem with fairy tales is not the image they send to my daughter about Prince Charming and aspirations to be a princess. However, I would like to send a strongly worded letter about the fallacy in Sleeping Beauty that one can sleep for potentially 100 years and wake up like they were when they went to sleep. What does Princess Aurora do, right after waking up? She prances off to a ball and dances a waltz. Kiera must be thinking, "WTF" right about now. Her experience is far different than the fairy tale.

Kiera is currently awake from her 2 weeks of sedation and paralytic but is suffering from critical care myopathy where she can barely move more than her hands and head. The doctor told me that there was a study that showed that even an olympic athlete placed on a ventilator in the state Kiera was in for even a week would wake up with enough myopathy that it would be as though he never trained. I suppose Disney hasn't seen this study. She is very weak and requiring the ventilator for all her breathing. (Which made the 2 day power outage at the hospital this weekend a real nail biter. More on the scumbag vandals who damaged downtown electrical lines later. Grrr.) Kiera is very sad and cries when she tries to move and can't. This will be a long recovery process, requiring at least a month of therapy.  The poor baby is most upset that she can't do her jigsaw puzzles or play with play doh. One can only watch so much TV.

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.