Kiera is HOME a little worse for wear

We got Kiera home last week on Wednesday and have been adjusting to life with a ventilator once again. The first two nights home involved at least 3 ventilator alarms in the middle of the night each night. Oddly enough, the transition home has been much more awkward than our first discharge when she was 1.5 years old. For people that have been using the same home healthcare company for 5.5 years, one would think they could get supplies ordered more easily without so many hoops and delays. The nursing agency has no sense of urgency in getting us nursing care, and mostly throws up roadblocks regarding paperwork for services she has been getting continuously for 5.5 years. I get that some things are new, but things like getting new prescriptions for Kiera's albuterol treatments shouldn't be such a huge hassel for them, when Kiera has been on the same Albuterol regimen continuously for 5.5 years and they have those orders on file!!! What did they do? Throw out everything the minute she was re-admitted and incur amnesia? My supply company, has changed their ordering process, and it seems to be taking at least 3 calls to get anything done. My case manager doesn't do much to help, but mostly irritates me. I am so tired of working with bureaucrats who haven't the first clue about patient care. I could do every one of their jobs better than they do it, but I am at their mercy, and they really enjoy asserting their power and pushing people around. Of course, the best part is that each company is pretty much the only game in town, so I can't shop around. The doctor has said Kiera can't go back to school. One doctor said frankly, "If you want her to die, then send her to school." Soooo...we are back to trying to get homebound educational services, but since Kiera uses sign language, services are limited. They only provide 2.5 hours a WEEK with a teacher, and Kiera is prime for learning to read. I love her ASL charter school and am so bummed she won't be able to keep going.

Kiera has decided she is a Pirate!

I believe we have now watched "Elmo and the Bookaneers" at least 100 times. Is there an award for that? Kiera has rediscovered a love for Elmo and pirates. She's been wearing a scarf on her head every day to pretend she's a pirate and is in love with pirate sea chanties. I think the love of pirates is actually behind her interest in Sponge Bob which was the theme of "Kiera's 7th Birthday Party Hospital Fun Time Wow." Kiera is also kind of diggin' her climber crib with the canopy (to keep her from escaping and getting hurt since the nurses can't watch her every minute). I think she thinks it's a fort. She likes to push us out of her crib and raise the rails at night when we are trying to say goodnight and give her a kiss...kind of like "Get out of my room, mom!" We might have to get her some kind of canopy for her bed at home. I think it amuses her. In general, she is in good spirits and coping pretty weel for 3 months of being in a hospital room. They are weaning her vent settings to CPAP for 6 hour stretches twice a day. Maybe we will be able to wean her to an HME during the day and ventilator CPAP at night. That would at least maintain some of the mobility she is used to. It is irritating that in order to get discharged from the hospital I will be required to get re-trained on the LTV ventilator, even though I operated the thing in my home for 3 years and could probably train the trainers at Apria. On a different note, there is always a dark cloud over all of this. When I got married and the boys were 8 and 10, I thought I had joined a family, that my children would have older brothers who would always be there for them. Apparently that was a lie, and I was a glorified baby sitter,tutor,cook, and chaffeur. My stepsons, soon to be 20 and 22 have failed at basic human compassion. I am extremely disappointed. They are so selfish they couldn't figure out how to come to her birthday party that we had to delay because she was in a coma on her actual birthday. I just can't believe they are so absolutely uncaring and cruel. They have only visited once in 3 MONTHS(mostly because I made them), and they didn't bother talking to her. Who doesn't visit a 7 year old girl in the hospital on a ventilator on her birthday, especially when the girl is your sister? The hospital helped throw the party. Girl scouts who don't know us came by with gifts and get well cards the other day, just because. Kids at Kiera's school sent cards they made. Children everywhere are taught to love their neighbor. I grew up knowing that we should minister to the sick. And my mean stepsons can't reach out to their sister when she needs them. How can they be so morally bereft? Kiera will not be able to count on them if something ever happens to me. (which is ironic because the stress over them is probably what will kill me). I hate to think of her getting sick like this when she is an adult and waiting alone for her brothers to visit who never come. Somehow they missed that part of growing up and becoming aware of other people's needs and feelings. God help them if they ever have kids.

Catch 22

Kiera is looking and feeling much better, but on the hospital ventilator at relatively high settings. So we are in a very confusing position of being happy that she is feeling better even though it is only with medical assistance that will continue to keep her in the hospital. Everyone making conversation with us at the hospital will say things like, "You must be happy she's looking so much better." It is hard to communicate to them, the difficulty of being happy when you know the very reason she is better is the exact same reason she can't come home. She is getting stronger while on the vent, so hopefully she will make a better transition to the LTV next week after more recovery. She walked with assistence 2 laps around the unit (ventilator in tow) on Friday and sat in a little chair we brought about 3 times per lap. We are waiting on some AFO's to help her ankle support. There are some positive changes. She has her mad puzzle skills back and is playing a little more creatively than before. Her spirits seem better now that she is back to doing more normal things. She is all smiles when we come in to see her and up to no good. The nurse caught her standing up in her crib the other day (a jail in order to keep her from climbing out). She had pulled the exam light down, turned it on, and was shining it out into the nurses's station. Then the nurse came in, and said sharply, "Kiera, what are you doing?" Kiera plopped down immediately. Then when the nurse turned her back, Kiera stood up, turned off the light, and then sat down again...like she was trying to cover up the evidence of her indiscretion. She is taking extreme interest in helping with her own health care, and is showing a little interest in food. I'm working on getting some feeding therapists in there to work with her.

Starting Month 3

We had another care conference yesterday after putting Kiera back on the hospital ventilator on Monday. It looks like she will be at least another month in PICU minimum before getting to come home. After being on the LTV home ventilator for 2 weeks, it was just not ventilating her sufficiently. She was unable to breathe off CO2 effectively and her levels were much too high. She just isn't ready. After 2 days on the hospital vent, her PCO2 levels which were in the 80's are now down in the 50's (40's being normal). Unfortunately, this means that the saga of daily hospital trips continues. They also moved us to another room, as per protocol for infection control, so we lost our beautiful windows in the corner room. I'm not totaaly sure how I've pushed through for 2 months already, and a 3rd month is daunting. Poor Kiera must be so miserable and pent up. There's only so much to do in that room on a daily basis. Like Rapunzel, she can "read a book, or maybe two or three, add a brand new painting to her gallery, or brush and brush, and brush her hair." That, and jigsaw puzzles, playdoh, and Disney movies can only go so far. The hospital is definitely no Disney vacation.

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.

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.