Wednesday, August 12, 2009

The Game Plan

Me chilln out with my Lil Man! He blinked
Pretty soon he isn't going to fit on my lap - sighI started off the day on an up beat, good note. I got up around 6:30 (that's with passing out around 9:45 last night...I was so out I didn't even hear the phone ring when Dan called, sorry dear), took a shower, did my face n hair (yeah everyone on the floor is wondering why I'm "dolled" up), got my coffee, and ALL before rounds. SMILE! All in hopes that today will run smoothly, um Not so much. So hear it goes once again. As Avrianna would say...... Gimme the straight poop (thanks Dan).
This morning the doctors ordered an ultra sound of Danny's abdomen to see if there are any clots or anything abnormal that would warrant Danny's loss of protein, albumin, and zinc which might be causing the fluid retention and bloating. He is getting it all in his TPN so he should be ok with levels, but they continue to drop. The ultra sound tech was up in the room very promptly much to my surprise, BUT the correct machine wasn't ordered. So they are going to have to have them come back up to do it again. OOPS! BUT the ultrasound that was done with the first machine did show "something" in his left kidney still ~ WTF?!?! Dr Durkee came up to the room immediately to say how disappointed he was with the recent findings, but seeing Danny has been through so much and there isn't any evidence he's in discomfort from it we are going to watch it and recheck it in 6 months. Well hell we might still be here by then ~ God I hope not. I'm to the point of putting a sign on the door.....If there you don't have good news then you can NOT ENTER, lol. I was so disappointed to know Danny went through all of those kidney procedures and he still has issues. I went down to get a Smoothie and cry after I was told that. Now I'm better and ready to take on the floor once again.
Some of tests have shown evidence that Danny has a lactose intolerance so it's a good thing that none of his formulas had a milk base to them. Which then strikes an interest with some of the doctors that this might be an allergic reaction to the formula he was on, so once again they are attempting to feed him with another new formula called Neocate Jr which is suppose to be an easier formula. The decision at this time is to leave in the GJ tube and see if the irritation is just due to it being so new and Danny just needing to readjust to it as we all know Danny takes along time to recover and acclimate to new things. They are afraid that if the new formula or the attempts of putting things in his tummy fail then we would have to put the J port back in. We are trying to give him some of his meds in his tummy but his food is going into the intestines right now. So until we have more concrete evidence of why this has all happened and if he starts to tolerate things in his tummy then we will discuss pulling the J port at that time. Please pray no serious retching or diarrhea in the next couple days! And that no other serious testing or procedures need to be done to my Lil Man.
So the "Plan" is IF Danny should tolerate the GJ tube feeding n meds for a few days then they are going to transfer Danny back to Children's Fox Valley. So it looks like the soonest would be Monday for us to break out of here and get closer to home. At least we have a good idea now of what Danny needs to do and what Fox Valley is willing to handle with Danny's recovery. That will also gives us some time to get a good sense if Danny is on the right path with trying to get him off the TPN n Lipids or not. These constant U turns we've been riding suck! I don't want to go back North to be sent right back down if things are off. Now if Danny should pull out another trick out of his bag then the deal is done and we'll be here longer.
The Doppler Ultrasound was just done so now we await what the GI doctor report on if there was any findings in that one.
Dan and Avrianna have been very busy with the finishing touches of the new house getting it ready for the parade this weekend. I wish I was there to help them out. I can't wait to see it finished and be able to show Danny his new home.

1 comment:

Anonymous said...

I will definitely pray that things get better for Danny and that he is able to avoid anymore intrusive procedures. He's been through so much and has the best mom in the world !
Thank-you for updating, I think of you and your family often and am so hopeful you'll soon get through this crisis.