So today, it was back to the hematologist to repeat bloodwork and again his neutrophils were lower. Although other number were improved and she feels like his bone marrow is recovering, she decided to start him on neupogen shots. So they gave him his first shot, which he fought...hard. The poor nurse ended up sticking him twice because he kicked so hard out of my hands he moved his leg just as she got it in and it came out. We also had some teaching to do the shots at home. We went to pick up the prescription and of course it needs prior authorization so we can't get the medication until possibly tomorrow if we're lucky. So now we have to go back into the city to get his second shot tomorrow.
We also stopped in quick to visit with his Liver team. Unfortunately, we are STILL trying to get him back into his target range for his FK level(prograf anti rejection medicine) . It keeps coming back low, and his liver enzymes have creeped up just a bit. Hopefully this weeks enzymes will have recovered a bit with a higher dose of medication and not an indication of rejection.
And I decided that I will now return to the city to get his bloodwork on Thursday because labs here take way too long to get levels back, and in turn it's that much longer to fix his dose if needed.
We also stopped in quick to visit with his Liver team. Unfortunately, we are STILL trying to get him back into his target range for his FK level(prograf anti rejection medicine) . It keeps coming back low, and his liver enzymes have creeped up just a bit. Hopefully this weeks enzymes will have recovered a bit with a higher dose of medication and not an indication of rejection.
And I decided that I will now return to the city to get his bloodwork on Thursday because labs here take way too long to get levels back, and in turn it's that much longer to fix his dose if needed.
It makes me angry to think all of this is most likely caused by him having back to back to back viruses.
I have constant emotional motion sickness. His numbers are good, oops now their bad. Oh looking good again, Woops. Nope. Fool you.
I want him to be a normal kid and be able to do things like and with other kids. They specifically mentioned to be careful of the flu and don't let him around people who have not had the flu shot. How can I possibly monitor that? How do I know if all the kids in his class had the flu shot? Or that their parents didn't send them to school sick. The whole things is just so frustrating, but things could always be worse, and we continue to be thankful that he is pretty healthy and so happy go lucky and is one resilient little guy. And it makes me feel bad writing and complaining because he makes you really think about life and how much pain he can be put through and still smile and laugh and make us laugh all day long. As young as he is, he definitely has purpose in this life and watching him makes me strive to be a better person every day for him and Danny and to appreciate the small things.
I want him to be a normal kid and be able to do things like and with other kids. They specifically mentioned to be careful of the flu and don't let him around people who have not had the flu shot. How can I possibly monitor that? How do I know if all the kids in his class had the flu shot? Or that their parents didn't send them to school sick. The whole things is just so frustrating, but things could always be worse, and we continue to be thankful that he is pretty healthy and so happy go lucky and is one resilient little guy. And it makes me feel bad writing and complaining because he makes you really think about life and how much pain he can be put through and still smile and laugh and make us laugh all day long. As young as he is, he definitely has purpose in this life and watching him makes me strive to be a better person every day for him and Danny and to appreciate the small things.
No comments:
Post a Comment