Here we sit on the 4th of July at the hospital. Tyson fevered yesterday and had a ton of bruises and petechiae (little red dots) from having super low platelets and was sporting an infection in the other knee! We left the hospital last Sunday afternoon and Michelle our awesome home health nurse was coming three times a day to give him IV antibiotics through his port, which we just kept accessed all week. Ty felt great and played and was happy and has started to interact with Michelle (he used to ignore all medical personnel) and wants to administer his meds himself, put the stethascope in position himself, and take his own temp. His nurse said little kids like this have so little control over what is happening that when they want to do everything themselves it gives them a feeling of having control over something. I'm glad he understands what's going on and is ok with it. They did a CBC a couple of times during the week and we were surprised to find out it was 300 on Friday. (it had been below 100 for a few days) His platelets were only 19, but they called PCMC and they said since he looks like he is recovering, take him off the antibiotic and put a mask on and go to the movie :) We did just that and went to Cars 2. We took clorox wipes and hand sanitizer with us. Saturday we had a barbeque at Grandma and Grandpa's house and watched the uncles light some fireworks, and I got some candy bags ready so the kids wouldn't pick up candy at the parade (too much germs with a low ANC). I'm glad we did all of that-Ty has been perfectly ok today to just eat his candy instead of going to the parade, and we got to enjoy some fireworks before we ended up in here. This stay in the hospital has been great, Ty has been in a good mood, I have a better attitude, and I brought some activities for Ty to do so he has had fun. I am guessing that whatever he was fighting last time we were here didn't completely leave so being off the antibiotics for a day made it come back. Michelle told me to text her if I had any problems at all up here, which I haven't, but she works here and knows a lot of people so she's watching my back :) Did I mention that we love her? Tyson hated getting accessed until she taught him that it was a magic sticker and showed it to him after she deaccessed him (you can't see the needle after it's out) and had him touch it and stuff and now he is ok with it. She is also really nice to the other kids who gather around whenever she is there cause she is so fun and friendly. Sooo I miss the other kids, but I know they are having fun with grandmas and grandpa and I have had a chance to create this blog. I am so thankful for modern medicine and for the research and knowledge they have gained over the last few years on ALL. When I was a kid a lot more peole died of Leukemia than do now. Thanks to all for the prayers and well wishes! We are doing great! and are sooo blessed and thankful. Ty's ANC is still zero and they want to see his marrow show some signs of building back up before we can go so we don't know how long we will be here. Ty still has a fever but feels much better after getting platelets and blood in the night.
Happy 4th of July!! PROUD TO BE AN AMERICAN and proud of my hubby who sacrifices so much for us.
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