Well we made it in to MassGeneral without getting lost today, although I technically parked in the wrong garage for the building that we were going to. We met with the CCC first. This Dr Boxer is so fabulous, she is very thorough, and her main goal is to help us however she possibly can to get Sammy better. She makes it a point to answer all my questions, and discuss everything very thoroughly. I had her take a peak at Sam, and she said he doesn't at all sound like a pneumonia, but his cough and the runny nose are pretty yucky and she said to keep a very close eye on it. Her main concern today was Sam's weight loss. The last visit there he was 32lb 7oz and now he is 32lb even He was in the 33rd percentile and is now in the 27th.
We also saw Dr Zella and he too is wonderful. He is so good with Sam and is also very thorough. The CT angiogram from yesterday came back normal, he was quick to say that it wasn't the perfect test. He went on to say that essentially they would wait until Sam bleeds again (just like CHildren's) and at that point they will do a colonoscopy/endoscopy as well as the angiography fluoroscopy (Sp?) So although I am relived that the test came back normal, I am frustrated with the thought that I am just supposed to wait for something bad to happen, and not be proactive with his care. So we wait...
The cough and cold that he has been developing is getting worse and worse. The mucous still remains yellowish but isn't quite green, so praying that this would resolve prior to needing to go to the dam.
1 comment:
It's hard, the waiting for something bad, isn't it? It's exhausting.
Hoping your little man hangs in there.
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