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Nov. 9, 2009
Back from clinic
Noah's hem/onc clinic went well today. His hemoglobin is up over a point since he was discharged almost a week ago - that is great news. He has quite a ways to go still, but it looks like we are moving in the right direction with the venofer. He had a venofer infusion today in the day hospital (in the clinic) and will be returning weekly for infusions for a while. The goal is to work him to the point of only one infusion per month.
We are doing this in an effort to get Noah's hemoglobin up and keep it up while reducing the number of transfusions he needs. Noah's anemia is just one small part of the issues he faces, but I have to tell you that it feels GREAT to feel like we are making headway even in one small area!
The only "downside" to the visit is that we now have no explanation for how utterly pitiful Noah looks and feels. He is startlingly pale and often has very little color even in his lips, but has dark circles under his eyes. He has very little energy and even a short time of active play leaves him completely drained. He is also having episodes where it seems hard for him to walk. It's hard to explain what it looks like - almost like he has a major muscle disorder or is walking on a very painful surface. The first time he did it I thought his shoes must be on the wrong feet (we have checked his shoes for fit, comfort, etc.) When he does this, he very quickly asks to be carried. I asked him today if walking made his legs hurt. He said no, that walking makes his legs cold. Any ideas on this?? Another really odd issue is that Noah has become VERY photophobic since this illness. He has always been a little sensitive to light (probably because his pupils often fail to constrict properly), but he wants most of the lights out all of the time. He was very upset the other day because I wouldn't "turn off the sun." He had several episodes of utter hysteria in response to light in the hospital, and while things are easier here (easier to control light levels), it is still clearly an issue.
Noah's current state is such a mixed bag. One one hand, he doesn't look very good at all, but on the other hand he is the picture of radiant health compared to where he was 2 1/2 weeks ago. I KNOW that I need to be patient and remember that Noah was very gravely ill and that he has come a long way in a short time, but it is hard to wait. He needs to get strong so he can stay strong and stay home and healthy for a long time.
I know this probably sounds whiny. I'm incredibly thankful that Noah is doing so well - I really truly am. Just seeing him makes my eyes tear up several times a day. Things could have gone very differently and I don't want to come across as anything other than profoundly thankful that Noah is home . . . yet it's painfully hard to see things like him struggling to walk even though I am immensely grateful that he is walking at all.
We'll be seeing the wonderful Dr. B (Noah's new pediatrician) tomorrow for a hospital follow up. I'm hoping he can offer some guidance on how to get our "old Noah" back. The hematologist feels that this is just the price Noah is paying from being so very, very sick. While that makes sense, I also want to do anything I can to help him feel better.
Thank you to all who visited Eithene and prayed for her yesterday. They were able to get her a functioning broviac (YAY) but she still has a very long way to go, so please keep praying. As some commenters mentioned, Gavin's family needs your prayers. Little Gavin went home to be with the Lord late last night. He was only a few weeks older than Noah and had been fighting mito very hard. His fight is over and he is at peace now. No more mito, no more infections or lines or pain. I hate this disease so much. I can't imagine the pain his parents must be feeling. Praise God that they have the sure hope of spending eternity with their beautiful little boy.
I'll try to blog after our appt. with Dr. B. tomorrow.
Blessings,
Kate |
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Posted by Anonymous 
Nov. 9, 2009 - Untitled Comment