Wednesday, June 28, 2006 - Home Again
Well there's not much new to say at this point ... except that we're home. Now we must wait for some answers.
Yesterday James had his biopsy done. They decided on just the bone marrow. Our GI and Genetic doctors believe that James has a storage disease ... thinking along the lines of that his body is not processing the fat properly and possibly storing it in the wrong places, therefore causing swelling. There are many storage diseases and they hope to get the answer on what kind thru the bone marrow and the skin biopsy. It takes about a week for the results on the bone marrow, and 4 weeks on the skin ... altho this can be sped up somewhat. They will likely want to wait for all the results before making a final conclusion ... with this in mind the doctor said to go on our holidays, although he did question the driving aspect. I pray that they will have an answer, my biggest fear is that everything will come back okay and we have to start over. Our doctor is pretty confident this will give the answer, or at least the direction to the answer ... I wish I had as much confidence as he does. He did say that this will probably narrow down what we are looking at and then depending on the results there may be some further tests to get to the exact diagnosis.
James did well with the biopsy. He slept a good part of the day afterwards, but still went to bed at his usually (hospital) time of 10pm. When not sleeping he was up and at it as if nothing had happened. Thankfully they removed the IV pretty soon after so I didn't have to chase him with the pole for too long. Hopefully this past week pays off and we'll soon be able to move forward towards treatment. For the time being we were told to just continue to do what we can to maintain his weight. As long as he isn't going backwards we're doing okay, sometimes this is easier said then done, but right now he's holding pretty stable.
It will be 3-4 weeks before we have any further appointments so we'll try be patient and we'll let you know once we hear something. Thank you all for your continued support.
Yesterday James had his biopsy done. They decided on just the bone marrow. Our GI and Genetic doctors believe that James has a storage disease ... thinking along the lines of that his body is not processing the fat properly and possibly storing it in the wrong places, therefore causing swelling. There are many storage diseases and they hope to get the answer on what kind thru the bone marrow and the skin biopsy. It takes about a week for the results on the bone marrow, and 4 weeks on the skin ... altho this can be sped up somewhat. They will likely want to wait for all the results before making a final conclusion ... with this in mind the doctor said to go on our holidays, although he did question the driving aspect. I pray that they will have an answer, my biggest fear is that everything will come back okay and we have to start over. Our doctor is pretty confident this will give the answer, or at least the direction to the answer ... I wish I had as much confidence as he does. He did say that this will probably narrow down what we are looking at and then depending on the results there may be some further tests to get to the exact diagnosis.
James did well with the biopsy. He slept a good part of the day afterwards, but still went to bed at his usually (hospital) time of 10pm. When not sleeping he was up and at it as if nothing had happened. Thankfully they removed the IV pretty soon after so I didn't have to chase him with the pole for too long. Hopefully this past week pays off and we'll soon be able to move forward towards treatment. For the time being we were told to just continue to do what we can to maintain his weight. As long as he isn't going backwards we're doing okay, sometimes this is easier said then done, but right now he's holding pretty stable.
It will be 3-4 weeks before we have any further appointments so we'll try be patient and we'll let you know once we hear something. Thank you all for your continued support.
FoozeBall ... James way to pass the time
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