Austin, numbers are looking good. It was a busy morning for Austin and me.
We decided to do our blood draw at Wyandotte early hoping the results would be turned around by the time we had our appointment downtown Detroit at 9:30 a.m. Thankfully, this blood draw only took 25 minutes, almost half the time for last week.
At downtown, while I was waiting in the room with Austin, before the doctors came in, I had the results in my email inbox. Hemoglobin is up to 13.2 (very good normal is 13.5 -17) and his Platelet count is starting to come down (he peaked at 741, this week we’re at 634, normal is 150-450). Both results are doing what they want them to do - hemoglobin up, platelets down.
I asked the doctors when we will know if this has really worked, when will we know if we would need to go through more rituximab treatments or would there be other treatments required. Didn’t get an answer because they told me they couldn’t answer those questions, we can only wait and see. Darn those physicians, I wish they had a better crystal ball.
Our big focus now will be reducing his steroid dose, he’s on 50 mgs a day which is on the high side. He’s eating ALL the time. The first words out of his mouth in the morning, every morning, is “What’s for dinner?” He weighed in this morning at 169 (he’s put back on all the weight he lost, he was down to 152, and then some). In January we took the dose down to 40 mgs but his numbers took such a dive we brought it back up to 50 mgs. Tomorrow I’ll start him on 40 mgs a day again and we’ll have to wait and see what happens with the numbers next Monday
I have managed to filter in some healthier snacks such as yogurt, apples and bananas but the kid wants to eat every 30 minutes and if I’m not in the kitchen area who knows what he’ll eat or how often. Genevieve busted him on Friday for Doritos (stuff mom doesn’t buy but dad does.) I had gone to pick her up from school and when we got back the tell-tale sign was all the orange around his mouth and on his fingers.
I was amazed how easy it was to slip MiraLax into his Juicy Juice to combat the constipation associated with the Rituximab treatments. When we were in the hospital there were a few things they wanted to slip into a drink for testing or what not that he always picked up on and wouldn’t drink. Now if I can only get his rash from the vaccine to go away I’d be really happy, the doctor feels that the steroids are slowing that healing process. His face is much fuller as well, it’s like it never went back to its original size.
We’ve been fortunate that the steroid dose has not impacted his behavior, I’m quite surprised, his behavior overall has been very good. I’ve actually cut his Paxil dose down from 10 mgs to 5 mgs and I think I will eliminate it all together (we went on the Paxil, along with our 10 mgs of Abilify, the first of November to try to reduce some of the anxiety centered around the holidays, holidays are well past and he’s doing well so I really want to take one med out of the mix.)
So now, we’re thankful all is going well and we’ll just have to take it one day, one week at a time, we’re at more of a cross country pace rather than feeling like we’re in a luge run J.
No comments:
Post a Comment