After we got out of the hospital last Friday John was doing pretty good, until Sunday. His stomach did not like food or liquid very well but luckily with the right combination of meds we were able to get it under control so that he could have his tube feeding overnight. Luckily that went well and his stomach has been fine since. We are still having a hard time getting him to eat solid food but we are working on it. He ahs to try to have at least a handful of solid food per day just so his stomach still knows how to react to solid food.
We have been giving him the HGH shots everyday but today his blood work came back and he only has about 100 white blood cells. That means our house is on lockdown! We can not have any sick people or people that have been around sick people at our house. John can not go anywhere except the doctor, which ironically is where most of the germs are, until his WBC counts come back up. It is difficult to be germ free with two 6 year olds.
Tomorrow is another first in our treatment. When we got a call about his blood they also told us that his hemoglobin was down so he has to have a transfusion. We are going in at 9:30 to a blood type and match. That is supposed to take a couple of hours. then we have to do the transfusion which will take another 2 to 3 hours. It will be a long day. I hope it all goes well.
We got more cards in the mail this past week so I wanted to stay thank you to the cricut card fairies. We love all the cards and he loves to see what they all look like. Thank again to everyone for all the cards and gifts!