Wednesday, October 23, 2013

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.

1 comment:

Rain said...

weaning to an HME sounds good, it sounds like she's heading in the right direction. That is so great. Retraining shouldn't take long. I remember my first training on the LTV. we just went over basics anyway and I was never taught that if her trach came out that the vent wouldn't beep or alarm. Learned the hard way on that one and thank God Dad was able to rescusitate her back. I understand where you are coming from about your stepsons. When Brooklyn was in the hospital and even now, the older kids acted as if they couldn't care less about her. They never bonded. Thankfully, I believe I can count on Brooklyns surprise little sister to watch out for her. It does hurt very much about what you are writing about. cruel seems to sum it up. I'm sure you are very concerned for her for the future as I am with Brooklyn. Looking forward to your training on the LTV, cuz that means she's going home soon. Hugs, Brooklyns mom