We actually got home Sunday evening then had to go right back to West Virginia today for a followup appointment so we could get all our ducks in a row.
Jophies Hypernatremia is still an issue but at the moment its stable. On the high end but stable. Normal range is 130-145 and as of his dishcarge from the hospital Sunday he was hangin out at 145. I'm having to push 120 ml of water after each feeding just to keep it in check. He is very volume intolerant so its taking me 24 hours a day just to fit it all in. Phew!
I do have a plan though.
Well you knew I would right?? :0)
I have a window from about 6 a.m. to 9 a.m. where I can sleep. As of now I can't because of fitting in all the water around the feedings. I had Sherrie(his ped) write a script for a feeding pump. Now this is going to be tricky to get this paid for because he is already being bolus fed using tubes and syringes. It actually takes around 3 hours to feed him because he can only tolerate about 20ml(4 tsps) every 20 minutes which is why I don't pump feed his food not to mention it makes him sick to have that heavy formula lying on his belly all the time.
OK so the state says you can have only ONE of the 2 choices for tube feeding not both.
SO, being the sneaky one that I am and knowing how those coniving folks work up there I had her write it not for formula feeds but rather water treatments due to high doses of sodium in the blood with the diagnosis of hypernatremia. Well they'll glance at that and not even bat an eye cause it says NOTHING about formula or regular feeds! It's all in the wording folks. Now lets pray it works! :0)
He also had a lower left lobe pneumonia which I think was at the same time as the lower right pneumonia he had a couple weeks ago. The Xray showed it as stable and improving which I don't doubt because he was getting better that way. His Mic-key sight did grow enterobactor but with me changing out the button plus being on the antibiotics already we think thats resolved as well. The sight looks just fine. His little bum is all raw/bloody again from the poooey which is most likely antibiotic induced. He still has to take the Omnicef but, only through Saturday and that will be it on the infection front then hopefully his bum will start to clear. It looks better today but Lordie bee what I have to do to keep it that way! Just call me the poop police! LOL
Tomorrow I have a bazillion people to call....
- Supplies have to be ordered
- Meds have to be picked up at pharmacy
- Supplies that I've already ordered are coming tomorrow
- The health department nurse is coming here to give Jophie his flu shot plus I'm gonna if she'll bring mine as well
- The Social worker for the program Jophies on is suppose to stop by so I can sign the papers that will ensure his services continue another year
- The feeding pump should also arrive tomorrow then I should be able to get some sleep
- I have messages and out the wazoo about organizing Jophies annual fundraiser. I've truly been trying to deal with this for 6 weeks but for some reason I just can't find the time! Go figure....
- Details need worked out so Jophie can have blood drawn here at the house each day for the next 10 days to make sure that sodium is doing what its suppose to
- Make a Wish called today while we were at the peds office so I need to return her call as they are ready to start his wish. Wheee!
- And last but certainly not least, I have to put on my angry eyes as Mr. Potato head would say so I can start rattling cages about Jophies subsidy. Here we sit in the 2nd week of the month and they still have NOT paid him. I do not have time for this not to mention I'm just plain tired! Phew! and UGH! all at the same time.
This momma is playing Pollyannas glad game!
I'm so thankful we are home and even more thankful that he's finally looking more like himself. :0)
Here's a pic from early Saturday morning at the hospital.
Now isn't that MUCH better than the last pic I posted?
OK gotta scoot!
Thanks again for all your prayers as you persistantly approach the throne in Jophies behalf. I appreciate it so much.