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.