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We’re back home now from our trip to Cincinnati after seeing Dr. P (GI) and Dr. H (SDS, hem).
GI: Michael weighed 83.5 pounds, 13.5 pounds up from the start of TPN, fantastic! They don’t want him to put on anymore weight though, and want to find a dosage that holds him steady between 81.5-84 pounds (he is 4′8″ tall). We discussed the fact that Michael obviously cannot go back to no nutritional support or he will simply go back to the way he was pre-TPN. We have to make a long term decision in whether to keep him on TPN and place a central line (same as his PICC, but in his chest–more permanent) OR place a J G tube in his stomach that will pass through the stomach into the small intestine for formula feedings. There are pros and cons for both and we are currently leaning towards the central line due to access for blood draws/IVs and etc. but we are still weighing the options. Either one will have to be placed under sedation, but we are hoping to do his bone marrow tap at the same time and maximize the sedation–we’re waiting to hear back about that. For now, they are going to give him the same mix of TPN every other day to see if that will maintain his weight–it may go to 5x a week if he starts loosing again.
HEM: There is not much to do at this point except watch and deal with each situation as it comes. His bone marrow is obviously declining but without the possibility of doing a bone marrow transfusion we will have to support with regular transfusions when the time comes. His white cells are staying steady with his every other day GCSF shots, he is currently at a dose of 5mcg per kilo, which is acceptable and gives us some wiggle room to increase if his white cells start dropping more or he gets more infections. When you get close to 15mcg per kilo you are running a risk of triggering leukemia. His red blood cells can be transfused when they need to, not getting close on that yet. His platelets are the ones that are steadily dropping, Mondays results being 26,000 and 27,000 (Toledo labs) the week before. They were at 34,000 on Tuesday in Cinci which, while better than 26,000, are still the lowest since Sept. taken in Cinci, so the downward trend is quite obvious. Dr. Harris wants to hold off giving a platelet transfusion as long as possible as a) the more transfusions you get the higher risk of reaction and b) the more transfusions you get the higher the likelihood the body stops reacting to them. Because Michael isn’t running around playing sports, they would like to try and let it go down to 10,000 before transfusing but will start watching for a trigger point under 20,000.
So the goal both nutritionally and hematologically is to keep him maximized as best as possible and watch and wait–and I really don’t do waiting well. It was discouraging to be in Cincinnati without a positive goal to shoot for and to be shifting from proactive to supportive. I’ll be setting up consultations with all his local doctors next week to get everyone on the same page and get input from them as well as to where to go from here.
We’re in Cincinnati tonight for a couple appointments and a get-together. We’ll be seeing Dr. H (hematologist) and Dr. P (GI) to figure out a plan for maximizing Michael’s health. Michael has his blood drawn every week to keep his TPN (IV nutrition) regulated and while we were on the way here the nursing company called me. His platelets had come back at 26,000 which is an all time low for him, she was concerned and wanted to make sure a doctor was made aware. I let her know we’d be seeing doctors tomorrow and she emailed me the counts flagged:
WBC 3.1 LOW (this isn’t too bad for him actually)RBC 3.41 LOWHGB 11.5 LOWHEMATOCRIT 32.9 LOWPLATELET COUNT 26 LOWRDW 15.2 HIGHABSOLUTE LYMPHOCYTES 0.6 LOW
We’ll go over it all with Dr. H tomorrow and see what needs to be done. Obviously we have to address his reaction to the platelets on the surgery day as he is going to need a transfusion at some point–this is one of the more immediate things that need to be figured out. I’ll post more tomorrow night.
Quite a few people in our SDS group are in town for appointments so there is a get-together tomorrow night of around 7 families, so we’re looking forward to that!
