Tuesday, April 7, 2009
What a Difference a Day Can Make!
A day can make such a difference! On Sunday when I last wrote, Max was really struggling. The doctors and nurses were working on helping him with both his nausea and his blood pressure. As a result, he woke up yesterday feeling much better and we have now had two good days in a row ("knock on wood")! We are thrilled and so is Max. He has been eating well and has finally stopped getting sick! He still struggles some with high blood pressure but, the doctors have called in the Renal Team here at Childrens and they are helping to find a solution that will get it under control once and for all. The Renal Team did a full evaluation of his kidney function yesterday and determined that besides his kidneys being "grumpy" from all the medicine he's had, they are functioning well. That was a HUGE relief, to say the least.
I thought I'd put a picture of his IV pole in this post so that you all can get a sense for the amount of medicine this guy is on! It's quite unbelieveable and overwhelming to look at this and to think about what is going on inside that little body as a result. Most of it is profilactic, meaning it is helping to fend off germs until his immune system is back in place. The remainder of it is helping his body to accept the engraftment of Ellee's marrow and spur it to grow. He has four pumps on his pole and there are about 20 different medicines that he gets between 2 and 3 times a day. He will continue to be on some of these even after we go home and the nurse told me today that some of them will continue for the whole first year after transplant!
Overall, Max is doing quite well right now and we are extremely grateful for that. We can expect to have some more ups and downs over the next week or so but, hopefully we have made it through the worst. Only time will tell.
The doctors have said that it is possible that Max's blood lines may be improving by later this week and that engraftment may be occurring by then! We are excited about that possibility and hopeful that we will have some wonderful news to share with all of you soon...maybe even before Easter!
Alex and Ellee and doing great at home too. They have been enjoying time with their cousins and aunts this week while they are on spring break (although the Cincy weather is definitely not cooperating with them).
We are all very anxious to be back home together and hope that it might be within about 2 or 3 weeks time! We'll keep you posted as things progress.
Kristi (and Matt, Max, Alex and Ellee)