So we are home from the hospital after Macy's hand surgery. It has been 2 days since her surgery on Friday and she already has the cast half-way off her arm. I am going to have to call the Dr. tomorrow to find out what he wants to do, because it is not going to last too much longer. We keep a pretty good watch during the day, but I think what is happening is at night when she is sleeping she rolls around and throws it in weird positions and ends up pulling out of it a little. Hopefully it won't get too much worse before morning.
Backtracking to the surgery a little bit...we had to be at the hospital at 5:30am. Her G tube must have gotten bumped weird or something because when we put the hospital gown on her her belly was all bloody. That was strange because it has never bled before. The nurse cleaned it up and put some gauze underneath and it never bled again so that is good. They took her from us into preop at 8am; we didn't see her again until she was in recovery at 2:00pm. 6 hours.....it was a long six hours. When her hand surgeon met with us before the surgery he said one of the more serious complications that can happen is that that finger can actually die. So the whole 6 hours of course I was freaking out. When someone tells me that there is only a 1-2% chance of something bad happening; it doesn't make me feel better anymore. We always seem to be that 1-2%. But, the surgery went very well; no complications. The poor thing though had the IV in her right hand so they splinted her right arm and taped it up so she could move or use her right hand, and the surgery was on the left so she couldn't move that because she is in a full arm cast. Needless to say she woke up ticked; and rightfully so. Luckily, she was drugged up on pain meds pretty good on Friday and Saturday at the hospital so she slept a lot. At that time you could see the tip of her fingers and new thumb barely sticking out the end of her cast. It looked nice and pink...good blood flow. So we went home Saturday afternoon. Yesterday we noticed her finger tips were not sticking out of the cast anymore but were about 1/2 inch down inside the cast (it is a full arm cast up to her shoulder...well, it started out that way anyways). And today her finger tips are not visible at all. I had to stick my finger down in the cast and when I felt them my index finger was completely inside the cast so they are about 2 inches down now. We will see what her Dr. says tomorrow about what to do about that.
It also doesn't help that Macy wants to crawl sooooo bad. She is always flipping over onto her belly and trying to figure out how to crawl with that huge cast on. Not going to work, and she is suppose to keep pressure and weight off of it.
Macy has been sleeping pretty good through the night. I am not sure if it's the drugs (she is still on some pain meds) or if she is just sleeping good. We are back up to feeding her almost where we were before via tube; but she did puke 2 times today.
Macy does have 1 appt. this week. She is getting an ultrasound done on her liver. When I met with her GI Specialist last week I told him I wanted to keep a close eye on her GI tract, etc. because GI cancers are common in those with FA (usually not this young) but atleast we can get a good baseline of what her liver, etc. looks like now.
I called insurance last week Thursday and they said they DID receive the appeal that the Genetics Dept. re-faxed over last Wed. morning so that is good. Since it is a pre-service appeal they have 15 days. I am definitely not going to wait that long to call again. I have learned my lesson of assuming competence at the insurance company, so I will call probably mid-week and every 2-3 days after to see the status.
take care, (and I will post pictures once I transfer them to my laptop)