Wrong direction...eek

Little worried. Kiera has been on the LTV since Saturday, but her PCO2's are slowly creeping up. 50's on Sat and Sun and now 66 today. I hope we don't have to go back on the big vent but won't be able to talk to doctors about it till after work. :(

Venting and Ventilating

Kiera had PCO2 of 46.5 today! Nice. So I guess she's "ventilating" right now. They are weaning vent settings a little. Hopefully we can try again to switch to an LTV after an unsuccessful attempt on Wednesday which resulted in PCO2's in the 80's. Ick. CT scan scheduled today to check out her pulmonary tree. Porta-Cath in and working. Kiera is in a crib in order to keep her from trying to jump out of bed (since if successful, she is still unable to stand on her own.) She did try walking with much assistance and a walker about 20 feet yesterday. I need her home ASAP. Two months of this has been worse than the year and a half when she was a baby. Most parents couldn't stand letting their 7 yr old have a sleepover at a friend's house more than 1 day in a row. Now my turn at "venting." As many of you know, I am a high school teacher. I can't help but be extremely frustrated with the education system right now. If you think of your favorite teachers when you were in high school, I guarantee that if they haven't retired yet, they will be lining up at the door in the next few years. Great teachers who taught us all to be independent critical thinkers and passed on a passion for learning will leave into obscurity before they are really ready because our government doesn't want individuals any more. They want us to push paper and generate numbers and never think outside of the box they have created. The teachers I modeled myself after would never tolerate what is happening, and they taught me well. The people who will suffer are our children. The one thing being left out of the entire assembly line system is the chance for children to try and fail and try again. We have locked them in to having to hit educational milestones by arbitrary deadlines like a birthday. We don't allow for any kind of developmental delay or varied pace. They all HAVE to have 4 years of math to get a diploma which HAVE to include Algebra I, Geometry, and Algebra II, and an upper level course above Algebra II; levels that some kids aren't developmentally ready for till their 20's. We have tested, them over and over and over again, long grueling tests that most politicians AND administrators couldn't pass, and we wonder why our drop out rates are so high. Plus, we give them less time to process the information, in 100 minutes classes where we have to fight to keep their interest piqued long after most adults would have given up. There is more pressure than ever before on families to make ends meet, and now our children are bearing the brunt of the pressure to succeed, even if their aility or interest lies elsewhere or they just need a little more time. We aren't giving kids options for their future. It's all or nothing, placing their entire self worth on exams. Our parents didn't do that to us. We grew up knowing that a test was just one tool, that it didn't determine our potential or worth. We had room in our high school curriculum to fail a class one year and still be on track to graduate without having to go to summer school. We had room to breathe... and think... and plan... and grow. I think about this a lot when I see parenting magazines that have parents concerned about the age of crawling, walking, rolling over, etc. I have a child who learned to walk when she was 3 and is now re-learning the same skill at 7. She knows ASL but does not talk. She is still in diapers and does not eat by mouth. She has indomitable spirit and a strong will to succeed and grow, but at her own pace. She has missed 8 weeks of school due to illness. She is not where the other kids are in some skills, but she can do jigsaw puzzles in 5 minutes flat. I want her to he happy and healthy, and get to do the things other kids do, and I really don't care if she does it by the deadlines the government has imposed on the educational system. When she is old enough to understand the test scores and deadlines, I want her to know that she is a wonderful person with a bright future, and that just by getting there on her schedule, she has achieved more than those for whom it came easily and "on time." I do not want her to live in a world where she will feel like she's not good enough. (Worse yet, we are putting are teachers in a position of feeling like nothing they do is good enough on a daily basis). If this is what I want for my kid, I am sure it is what most of us want for our kids. Standards are great! Competition is fantastic! Failure should be expected, and there should be a path for recovery and alternative timelines for a happy future.

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.