Tuesday, August 30, 2011

How Old Are You????

These pictures were taken this last weekend before his belly tap. Aaron really likes to hold onto things, lately if he's awake and grasping for things they give him his dog, duck, or bear to hold onto. (Yes Aunt Bonnie, the Alaska Bear! I need to remember to take a picture of that.)
Today I made it up for rounds. Nothing was changed so they went pretty quickly. The GI docs hadn't weighed in yet so there wasn't much to discuss. His flolan will be down to 4 tonight at 1 am so an echo was ordered for first thing tomorrow morning. If all looks good they may just take it off completely as 4 micrograms isn't enough to do much for him. Aaron's weight last night was down to 2390 and his O's stayed in the 30's most of the night and day. His side is just leaking like last time through the needle hole. The doc wanted to close it but said trying to do stitches would just create more holes to leak out of. He has a pressure dressing on it but it leaks once it gets too saturated and it is filling the diapers we place over it as well so his sheets get changed often. I was able to hold him during today's linen change this afternoon (thanks Rachel for helping out too). I certainly jump at the chance to hold him whenever I can. He did great too, settled right in to the crook of my arm.

Shortly after we changed Aaron's bed two of the GI doctors came in. They came over and introduced themselves and I couldn't help but wonder how old they were. They didn't look much older than their early 20's so I'm guessing they were either residents or fellows. I sooo wanted to ask but I behaved myself. They once again asked the question, "are there any illnesses or diseases in the family that we should know about?" And I asked, relating to GI or just in general? They were under the impression Aaron was always this swollen, I had to explain a few things to them. They also asked about my diagnosis and said it wasn't something they had heard of before, no shock there I haven't met a doctor who has yet! They talked about some labs they wanted to run and a couple ideas they were thinking of. They wanted poop, urine, and peritoneal fluid samples to run labs on. They then asked if they could take pictures of Aaron to show the "older" docs what Aaron looked like. No joke, they really said that! They asked how to lift the lid on Aaron's bed and wanted to know how to turn on the lights. The nurse and I shared a little smile and she showed them how things worked, seriously if it weren't for the nurses......

Ronny headed up just a little bit ago and I'm anxious to hear what his weight is tonight. Today he looked sooo much better. Today was the first time in a long time that when he is rolled on his side his face didn't completely swell up and he is back in the preemie size diapers. Hooray for that! Not yet back in the small preemie diapers but progress is being made, lets just pray it continues!