We are back home from Cincinnati (although we had to get up early and head to Toledo Hospital today for IVIG treatment from 8:30am through usually 3:30pm) and will be home until next Tuesday when we are heading back for one night. Anyway, GOOD NEWS first, and yes, we do have some good news, Michael gained SEVEN POUNDS in two weeks…let me repeat that just because we don’t get a great deal of good news, SEVEN POUNDS in two weeks. He looks really good and I cannot tell you how it makes me feel to rub his back and feel padding instead of bone. His GI is very happy with his weight and his nutritional numbers that show he is using the nutrition well although we have to add iron pills to his accumulating pile of pill (which he hates). Okay, just once more, SEVEN POUNDS. So, at 19, Michael now is 77.4 pounds and is the heaviest he has ever been in his life. They are hoping for another 7 pounds before surgery to give him a buffer.

We did talk a bit about long term goals in terms of what happens after surgery and he said we needed to keep in mind that the surgery is not going to change anything about his nutritional status and issues and that we are looking at TPN as a long term treatment. His PICC will have to be changed at some point and then they will decide whether to sew in a more permanent central line to the chest. He did say that once he is fully healed from surgery (months) and his nutrition is stable then maybe we could think about doing it 3 days a week instead of every day but that we should consider TPN a long term part of his care. I am glad to know that they won’t just pull it after surgery as I know he will need all the nutritional help he can get to fully heal, but I had mentally thought of it as a month before, month or two after. Still, when I see the difference that just two weeks of nutrition that his body doesn’t have to work so hard to process makes–I can certainly see its importance and we will adjust. We have some….frustration (which might be a mild word) thinking of how his health status would have been so much improved by either continued g-tube or TPN supplementation years ago. I am beginning to understand now why this GI has been almost outraged that he was misdiagnosed for so long or at least the nutritional aspect not questioned and his pancreas tested. Still, we are trying hard to just move forward as it really doesn’t serve any purpose to look back!

SO, moving forward, we have pulmonology in Cincinnati next Tuesday with (likely) pulmonary function tests (we are cringing to see these results) then we have the next week free so far. The week third week we’ll be back to see Dr. H (hem) and Dr. P (GI) for last stop before surgery. The fourth week is surgery week and we don’t have all that worked out yet, it is likely now that he will be admitted a day or so before the 23rd for platelet transfusion/s as his platelets are much too low to go into surgery with. It feels like time is going to fly by and I’m torn between wanting it to SLOW DOWN and wanting to just be done.

Did I mention that he’s gained SEVEN POUNDS?