So, Thursday was a pretty uneventful day. Urology visited us to remove the nephrostomy. This left a small hole in his side, about the diameter of a pencil, which they did NOT stitch, but merely taped (with one piece of tape) a gauze pad over it. They seem to have such a casual attitude towards this hole that leads directly to my son’s only functioning kidney, but apparently, it really is not much of an infection risk. And it is already closed up.
The rest of Thursday, we just hung out. He ate, he peed, he slept.
Friday morning, we started the huge list of things we’d need to do before discharge, which mostly involved people talking to me. I changed his Broviac dressing under supervision, I learned again emergency PD dressing procedures. We scheduled clinic days, we scheduled home health nurse visits, we scheduled his next visit with our family doctor. (I tried to lobby against the necessity of this one, since he was going to be seen by a nurse on Mon and by nephrology on Weds, but it’s one of those “required” things.)
I got our prescriptions, two of which they messed up. Heparin syringes for Broviac flushes daily, sodium bicarbonate and sodium chloride, which he takes 2 and 3 cc of twice daily, antibiotic which he takes once daily to prevent UTIs, and a multivitamin which he throws up once daily. I will have to remember to transfer those to our local compounding pharmacy.
I explained that I didn’t want him to get the Hep shot, and then got two separate lectures about that, including the fact that we should all get the flu shot, and finaly said that we’d do that through our family doctor. Then it was the RSV shots, which I also didn’t think he needed. I had JUST read the CDC website about RSV and the official opinion of the CDC is that he really doesn’t need them. The neonatologist would not budge, and though I could have pushed more, I really just wanted to go home. So we had everything else finished up, and waited another 3 hours for that shot to come up from the pharmacy.
As she’s drawing it up, she says that it probably won’t be covered by insurance because he doesn’t really “need” it. Yeah, THANKS. $900 per shot and they are “supposed” to get them monthly. sigh.
And then we were free to go. Our nurse was anxious to get us out of there, and basically had us kind of sneak out without escort.
And now we are home.
Essentially, Dr. Brophy (nephrology) doesn’t think that his kidney will hang in there for too much longer, but of course, we could be surprised! He expects that either we’ll go in for clinic one day and his labs will be bad enough that they’ll admit him OR what he sees as more likely is that things will just start to make a gradual slide and we’ll be able to ease into things a little. I guess we’ll see.
loves the pouch. mama loves wearing him.