NaBloPoMo has been accomplished! One post for every day this month, in spite of all the stress and chaos and having the first three days be out of state!
Today, I was thinking nothing more would be happening with trying to get stuff figured out for Little Man's various procedures, with it being Friday and the first day Dr. Tall and Thin was back in town. That is what I get for thinking.
We will start small. One of the things I was very frustrated with was not knowing how home health care was going to go. WHO would be the nurses coming out? Who would be delivering and in charge of all the various supplies for his PICC line? Who would be in charge of delivering his ridiculously expensive formula and g-tube supplies? I had no idea! The last time we did the PICC line, we had a different insurance provider, so that changes everything. His formula is not only very expensive, like feeding the kid liquid gold, at 7$ for an eight oz juice box, but it is made by only ONE place, so supply is sometimes an issue.
I found out today two different companies will be handling it. One for the PICC line and one for the G tube and formula. Yay! Now I know. I called the g tube people, known as enteral feeding, (now you have a new word!) to find out how much lead time they needed for his formula, and I was told at least 3 days. So as soon as we have a surgery date, I will tell the enteral peeps and they will handle it from there. Speaking of formula and all that, in case any of you care, (and it is cool if you don't) I can't wait to get him back on his liquid gold. (*I tried to link to the formula but it wouldnt work. If you care, then put SHS E) 28 in the search box for google, I give up!)
Ever since we have had him on this other formula, we have been dealing with vomiting and some blood from his GI tract off and on. When we get the g-tube his insurance will pay for the liquid gold again and he will grow and gain weight! Yay. Speaking of which, he quit the sausage kick he was on two weeks ago. He has lost 7 lbs in the last month. Now we are going to finally do it, I can't wait to feed my boy what he really needs for honestly, the first time in since he was a small baby.
I got a call from the GI doc's office, Dr. Very Nice and she wanted Dr. Tall and Thin's name, because, "something has just got to get done and maybe if she calls him, they can get this figured out." Wow. You could have knocked me over with a feather. THEN, at 4:30 on a FRIDAY no less peeps, (only some of you will understand the import of this. Drs do NOT like to stay late on Friday and usually by early afternoon on Fri, everything pretty much grinds to a halt until Monday. To say I was surprised is an understatement) Dr. Tall and Thin's office called me and told me that Dr. Tall and Thin was going to tackle Infectious Disease on Monday and get them pinned to date. Wow and wow again. All on a Friday afternoon. His VNS surgery has been rescheduled to Dec 11th. His PICC line and g-tube will take place some time before that. We are back with a date! A very busy day indeed.
By the way, a HUGE thank you to my wonderful posse who stuck with me through NaBloPoMo and cheered me on by leaving comments. I luv ya!
And now your reward. The Pea was helping Bam ma clean last night and figured out her very own way of doing things. What can I say? Not only did it work, it was cute as heck. Enjoy.
Friday, November 30, 2007
I Did It!!!!
Posted by
Jo
at
5:24 PM
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8 Kids Who Want To Play:
tee hee Not very efficient, but cute as heck. I can only imagine how relieved you will be to know he is getting the nutrients and sustenance he needs. Hooray for Dr. Very Nice, kicking things into place for you.
That's great. :)
Wow at getting info from doctors on a Friday afternoon! I hope the surgerys all go well. Your link to the "liquid gold" didn't work for me.
I'll be thinking about you.
Good job nanoblomamblogger.
I'm so glad your boy is going to get his liquid gold. How exciting.
Nice helper :)
Congratulations on posting every day during NaBloPoMo!
Jo, honey! I'm so sorry I haven't been around, I'm just catching up on everything with Little Man... wow... so glad to hear that you're finally getting the ATTENTION he deserves from the medicos.
Hi!
My blog is about enteral feeding! Be happy to see you there! Don't forget to say hi when you visit and chat about life with enteral feeding too!!!
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