Working towards going home

The last couple of days have been so like the last 7 weeks, very up and down.

In general, there's not been a lot of progress on the feeding front, especially from the bottle. He's just kind of doing the same amount or less each day. At first he was doing much better nursing but then had a couple of bad days there as well. Today was different.

The first time I tried, he had recently eaten and had a bottle feeding attempt from the OT. I arrived just as she was finishing with him. She showed me a new way to hold that might make it easier for him but at that point, he was done taking his bit from the bottle. At least he was calm, which was nice. So I held him in my lap and pumped while he slept. That's a bit tricky but once I pick him up for the visit, I really don't want to put him down. I've kind of worked out how to do this with a couple of the nurses.

Of course, after I was done, he woke up. We had a very nice time of singing and chatting. Then he fell asleep again. It was close to his next feeding and the nurse asked if she should set it up or wait and do it after her lunch break. I asked if she could wait.

A doctor from genetics came by to do an assessment on him. I figured it was good timing because if he was awake, I could try to nurse him. She did her thing and, of course, that woke him up. He began to get a tiny bit fussy so I thought I'd go for it. He did amazingly well! It was definitely the longest he had gone and he didn't get upset even once. We did both sides, not for an extended time mind you, but long enough for him to get some nourishment from it. He took his time but definitely was swallowing. I was so excited and kept telling him so. What a lovely change from yesterday and the day before. One thing I did different today was to ask for the mask of oxygen to put near his face when he started satting lower than he should be. That might have made it a bit more comfortable. He's still a bit stuffy and I believe it's tricky for him to breathe all that well through his nose and I think having the oxygen there helped a little.

So, forward progress when there was backward steps the last couple of days. Guess that's what they mean by two steps forward, one step back.

Another change today was his arms were free of any lines! I guess his PIC line had gotten pulled out somehow and since it was really not being used, they left it out. The only reason they were leaving it in was if he was to get a G-tube, they could have used it during the surgery.

Speaking of G-tube, we have now agreed to go ahead with it. The main priority now is to get him home. Really, the only thing stopping him coming home is the ability to eat. The G-tube is our only option at this point, unless we want to wait to see if he really gets it sometime soon, which I really believe is not going to happen there. All the nurses are doing their best but everyone has their own way of trying. They all have the best of intentions but I really feel he needs some consistency with feeding.

So, we gave the go-ahead today and they are trying to get it on the schedule for Friday or Monday. Once they get it in, it's just a matter of it healing enough to make it useable and then we prep for heading home! Hopefully within a week of the surgery, we will be home with our little guy.

We've got meetings with all the departments, Genetics, Cardiology, Neurology, Pulmonology and the G-tube team, tomorrow and Friday afternoons. I really hope I'm able to write some good news afterwards and not end the week with another major downer. Everyone cross their fingers ;-)