As promised, here are some picts of Rhett and his "Uppy." These two are fast becoming best friends. Only problem is, is that soon little Uppy is going to be twice as big as Rhett!!
Like his Monkey Quilt? It's the first quilt I have ever done. I don't have a sewing bone in my body, but after looking online it seemed simple enough to tie, then I had a neighbor sew around the edges for me. It ended up being alot bigger than I thought it would, but I guess that's good, it means he can use it longer.
The next part and picture read at your own risk, it's kinda yucky.
Now a question for all you G-tuber's out there. Rhett's stoma is draining like crazy, I have to change his dressing about every 2 hours. It's a dark brown color, with a just a tad of red blood in it. When I changed it tonight, he started crying and the stoma itself was gurgling and had bubbles and liquid coming out of it. I pulled back the water in his balloon, and there was only 4 ML in it, so I added 1 ML, they say there is supposed to be 5. Also, on one side it seems to be healing well, but the other side looks like a gaping fresh hole. It's been a bit red, and I took him to our regular ped today. They put him on an antibiotic just to be safe.
I am putting a barrier cream on it, then the gauze. It's hard to get the barrier cream around it though because of the retention disk. I know it hurts him for me to be moving it. It's also hard to clean around it, I clean it as well as I can with a q-tip and I am only doing it once a day. Should I be cleaning it every time I do a dressing change?
This all seems really overwhelming to me right now. I cannot hold this kid on my own and do dressing changes. My sister has been off of work today, so she has helped me, but I don't know what I am going to do when she goes back to work. I have a really good friend who's son also sports an extra chromosome, and her mom is willing to stop by every day around 5 and help me. I am sooooo thankful for that. But during the day if it keeps needing it every two hours I don't know what I am going to do. I'm sure it is hurting him like crazy. You go to pull his onsie up, and he grabs it an pulls it back down. He doesn't want anyone looking at it.
Another thing that's hard on me, is before he has just cried when I have had to do things to him, like the NG tube, or changing oxygen stickies, but now he has this really pathetic "don't!!!" that he has added to it. Oh my gosh it just breaks my heart. It hurts me to have him communicating with me and telling me that he doesn't want me to do it. I am glad he CAN communicate, but it is so sad.
After he is done, he gets a love from me and runs into the living room like nothing happened, but while it's going on he just cries. All he has to do is take one look at my bed with the medical supplies on it and it sends him into a wave of tears.
Please somebody tell me this is going to get easier. I had no idea it was going to be like this.
Anyways, he got a bath last night in the sink.....the only place shallow enough not to soak his incision site. He was pretty darn happy that he got to have a bath. Tonight didn't work out so well as far as the bath thing went. He ripped his dressing off, and sent his stoma into a bleeding fit, and we had to run him into my bedroom and get it all taped back up. Boy this kid's got some naughty little wandering hands!!