I've been waiting to update everyone hoping to say that we are home, but that's not the case just yet. Drew is making great progress on his feeds, and today will finally be at the goal! He has been taking 2 steps forward, one step back on them it seems since last weekend. They'd up it to the next incriment and his stomach would get upset, and we'd bump it back down and give him a break, then try it again later. So today we'll set it at the 40 ml/hr of formula that they want us to be at and hope he can hold it down. Yesterday, however, we had another issue the doctors were concerned about. I guess Drew's red blood count, his Hemoglobin numbers, have been climbing since the weekend. And climbing, and climbing. He was at 17.5, a number that was as low as 5.2 last week, and which the normal is about 13. His bone marrow apparently is now over producing red blood cells, and apparently, they've never seen this! The lead doctor on our team says she has never seen this in a nueroblastoma stage 4 case. They actually took blood off of him the last 2 days! She used the word bizarre about 3 times in our conversation. Their best guess is that the bone marrow is recovering, maybe from the cancer already being killed of, maybe from the Chemo effects wearing off, and recovering with gusto! It wouldn't be such a bad issue, if it wasn't for that blood clot in his head, remember from last week? They were worried this "thick" blood might move that around. So back down to CT scan we went. And the results--showed the clot is resolving! The infection there looks stable as well. So that concern is diminished for now. They are still giving him blood thinners while his red count is so high, and taking off blood as needed. Funny they are throwing away his blood now, and last week had several blood transfusions! They are continuing to monitor the numbers, and watch to see if Drew's bone marrow will calm down and get back to a normal production level. That will be another thing they want to see before they release us, a more normal count of 14 something.
It's been situations like this blood issue that I am reminded God is watching out for us. Had his feedings gone better and we were home--I'd have had no idea this was going on. But we are here, and the best doctors are working on him. I should have known that when our prayers aren't immediately answered, there are reasons. And Drew is doing SO much better overall. Every nurse is just amazed at how happy and funny he is. He's really turned on his charm again. And it's so refreshing, we really haven't seen THIS Drew since before Christmas. He was so sick at home and we didn't know why for weeks, and then we've been here and he's been sick, it's great to finally have our smiling little boy back!
Hopefully our NEXT update will report we are home, but if not, I have peace knowing God knows best. Take care all! Here he is with the Valentines that Molly made him at her class this week!
~Heidi
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