You know how they say that you can't miss something you've never known?
Tell that to Daylon. Let me explain:
These days, I'm no longer worried about Daylon dying any time soon of EB. Instead, I'm worried about him dying of malnutrition. We are seriously at a cross in the road when it comes to his eating, only to find that there is no more road.
Really quickly, we're back from Minnesota. The recovery has gone great and his mouth never did get any blister in the hours following the surgery.
Okay, so back to the eating situation...Daylon is gradually dropping a tenth of a kg every four days which probably doesn't seem like a lot but it is. His dry weight (what he should weigh) is 31.24 pounds. He now weighs 23lbs. Did I mention he's over 3 feet long? Just looking at him, he looks okay because he has a bigger head but once you lift his shirt! Wow-wee. He is literally transparent skin and bones. Dr. Tolar was all smiles and playtime with Daylon until he lifted the blanket and then he just looked at me and said, "Oh, no. We've got to fix this."
I spoke with the nutritionist and got a recipe for pretty potent formula but the only problem is, Daylon is refusing to eat. Like clamped down, shaking his head from side to side, kind of refusing to eat. The last two days I've actually had to resort to pinning him down and syringing formula into his mouth when he screams. It's awful. Not to mention his poor skin isn't handling it either. He's been this way for the last 2 weeks or so and it's getting worse everyday. It's like he's just lost the desire to eat. I'm having flashbacks to the first several months of his life. Ugh.
The funny part about it is he does seem to show some interest in "real" food and drink though. I don't get it. He's NEVER had real food before. Pre-transplant over ripe bananas and egg noodles gave him a blistered and bloody mouth, so most foods were automatically out based on texture. Because his GI and urinary tract blistered so easily he couldn't have anything acidic (juices, tomato sauce, etc) or else he had blood in his diapers and a VERY upset tummy. Seriously, he has no clue what food taste like. Ha... and he wants it anyway. I would be willing to try it out, but ever since he woke up from the coma he has not been able to chew and has difficulty just swallowing and breathing at times. I tried giving him refried beans last night and he was willing to try it, but choked and gagged and then puked. He has the world's easiest gag reflex too, which isn't helping anything. I will say though that once the doctor added the third anti-nausea med, his everyday puking has gone way down.
Naturally, putting in a G-tube again would be the next step but he's no longer a candidate for a g-tube. They feel that his skin can't support the constant friction and the catheter and trauma that's caused by the tube being there will make his nausea worse. I gotta say, I think so too. The next step is to put in another PICC line and start him on TPN again. The reason the doctors have been trying to avoid that route is that TPN has significant side effects when on for an extended period. It's supposed to be a resolution that can last a couple weeks until nutrition picks up. Daylon's been on it for months. We'll see what the doctors say tomorrow, but I have a feeling that he'll have to go back to a PICC. I really don't know what else to do. I'm traumatizing my poor baby and he doesn't even want to be around me the last two days because I'm constantly trying to get him to eat. By the end of today; he was crying, I was crying and he had eaten 11 oz for the day. A far cry from the 34 oz minimum that the nutritionist set.
Please pray that Daylon will have the desire to eat and I will be able to think of a way to get him all the nutrition he needs to be healthy and quite frankly, live.
That's all for tonight. I'm mentally drained and I want to sleep. Tomorrow I have a 10 am appt in Irvine and then dialysis at 12 with all five kids in tote. I gotta say, I'm not looking forward to it. Oh well. At least we'll all be together. That's about 20 steps of improvement from last week and 1600 mile distance between me and my kiddos. Keira doesn't have school tomorrow either and that's a huge plus. Just looking for the lining. The blessing are always there, sometimes I just have to make myself look for them.
PS- We had some time before church. Pretend like we weren't surrounded by cars and houses. :) Here's how we entertained ourselves: