Thursday, July 30, 2009

Cloey's summer so far

The Medical Stuff- After Cloey's bleeding episodes we saw a hematologist who after doing some blood work explained to us that Cloey is borderline Von Willebrand. which basically means that she doesn't clot very well and so will bleed and bruise easily. That's makes a lot of sense since she does bruise easily, and has had to have a few blood transfusions during surgeries. Because she has all of the plastic devices in her (ear tubes, trach, g-tube, de-flux) irritation turns to bleeding real quick. It mostly means we need to be aware of it and have extras blood in surgery. She had some much needed dental work done in the hospital and had a real hard time waking up in recovery, she had an irregular heartbeat and they had to hook her up to an EKG and call the on call cardiologist. After about three hours she was stable enough to come home, but it looks like she is no longer able to come out of surgery on her own and will need to be on the vent in the future. She had a case of pneumonia that thankfully she did not feel horribly sick, did not go away for six weeks. She had to have more oxygen and three round of tough antibiotics before finally kicking it. It was a lot of back forth to hospitals and doctors and getting up in the night, a lot of times her nurse, an on call doctor, and I had to work to keep her stats up. She has been having a real low heartbeat at night, so her vent setting have been raised to almost full support and she wore a heart monitor for two days (we will have the results in a couple of weeks).

The Other Stuff- We went to a ward pool party and I expected cloey to be pleasantly distracted talking to people, to care that she could not go in the pool. That was not the case. First she wanted to put her feet in and then sit in (Cloey WILL drown if her trach goes under water, so there is no swimming for her). Then she did something she has never done before, she said "I want to swim like the other kids" I tried to just talk to her and say, well the other kids don't have trachs and you do so you can't go in or you will have to go to the hospital, I'm sorry. or something similar over and over again. She just kept saying no and pulling away from me and then said "I don't want a trach anymore!" I wanted to cry. needless to say we won't be taking her to any pool parties anymore, it was rough. The positive though, is that shows how far she is coming cognitively. She has also started activity days at church (kinda like girl scouts) and special olympics. She will be competing in Bocce Ball this fall.

Saving The Best For Last- A super sweet cousin of ours apparently nominated us for a free photo shoot for a family with a critically ill family member, and Cloey was chosen! J'lynn Mak Photography generously donated a lifestyle photo shoot to us. we went to Anthem park and had a lot of fun, stay posted for the results, we can't wait! Thank to Melinda, Joanna and whoever else made this possible!

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