Where the heck have I been?

Well, first off, thanks for asking. Makes a girl feel loved, lol.

Let's see. Mostly doctor's appts, as usual. Only now we have the whole buying/selling/moving thing thrown in. My husband came home on Sat. and we have been working hard to get the house ready to list. Sprucing up the outside and shoveling out my middle child's bedroom come to mind. Outside is done, bedroom is still a work in progress. We are trying to list the house this week though so hope to get it done soon.

Of course, Tomas has not made this easy. He got out of the hospital on the 18th and started running one of his cyclic fevers on the 23rd, prefectly timed so that I would have to cancel his swallow study (I think he knew).

A pulmonolgy appt. for all 3 brought 7 new tests smattered among the little darlings (with bad lung genes).

Last week Tomas' nurse fell and sprained/tore tendons in her ankle. Replacement nurse came the next day, but then missed the next two due to a doctor's appt. and an ER visit on her part for a severe sinus infection. Do I want another replacement nurse? Um, no thanks, they are dropping like flies. Regular nurse will be back next week.

This week brought a pedi visit for that pesky fever. It doesn't get over 100.2, but has been around for almost 2 weeks now. A failed cath attempt and blood draw attempt brought a trip to the children's hospital for round two of torture the baby, but it worked. Still waiting on culture results.

Today was a waste of time and money at a dermatology appt. for him. Only thing worth even mentioning is that Tomas' cold sore isn't your typical cold sore (not really worth mentioning as I could have had the doctor pay me to tell him that) and is the kind you see in chronically ill kids. Smack me on the forehead, I didn't see that one coming.

Tomorrow brings a semi-big appt. with a new GI. It is the attending from his last hospital stay. The doctor was fabulous at the hospital and I hope that trend continues as Tomas has been draining up to 6 oz of bile  day from his stomach. His latest labs showed low electrolytes because of it. I have been giving him pedialyte but I can't replace 6 oz on top of what volume he is already getting for his feeds.

Thursday is a surgery consult to discuss the bile output as well. There is a chance that some stump of gallbladder remnant or some other weird (and rare - make me laugh) post gallbladder removal thing is going on with his bile.

Friday is a sleep study. Sweet, sweet sleep. Some good data from this study would be awesome, but even more awesomer would be a way to help him sleep better!

Now, of course my life isn't all medical. Well ok it is, but it doesn't really matter because the living still happens. Sleep not so much, but living  - hell yeah!