Ok, so I know I told you I would write when he moved...and I didn't!
Just know, the move went really well, Medstar came late, it took like 25 minutes to drive 6 blocks, and then the intake was like 4 1/2 hours long. But all in all, he is at a better hospital with a much better staff.
For those of you who wish to visit him, he in on L2E (Lower Level 2 - East), room 211. You don't need to sign in, you don't need permission, you can just go right in. When you get to the pediatrics unit, he is the last door on the right across from the nurses station. You don't even need to tell the nurses who you are, really!
In any case, he was doing a lot better. We were able to get him from a continuous feed up to a bolus feed which is more desirable for his situation. He was doing really good with that until he decided that he would start having his watery stool again. We did find out that he has a class 3 allergy to pork (I guess class 3 is the highest/worst), which his Pancreacarb (his miracle enzymes) is a pork derivative. So we quickly stopped using those (even though he was having no adverse effects from it), and put him on these vegetable enzymes that we can only get a Huckleberries and insurance, nor the hospital, will cover at this point. So now we are stuck with paying for these enzymes out of pocket. $11 for 60 pills, 60 pills are only good for just under 7 days. And these are supposedly the enzymes he will use for the rest of his life. This is going to get expensive!!!
So, making a long story short, we still don't know when he is going home, we still don't know why he is having such bad liquid stool, we don't know why he is getting this serious butt rash that he has. We have gone through like 3 different g-tubes and nothing has seemed to work. Everything we try just keeps leaking around the tube at the insertion site. We started out with a bard g-tube. We took that out and put a foly cathiter in. This is a urinary cathiter that is smaller in diameter that was inserted in it's place in hopes that the site will shrink down around the smaller cathiter. We will then take the cathiter out and put the g-tube back in making a tighter fit. That was the idea. So after a couple days with the cathiter in, the surgeon decided that it was time to put the g-tube back in. Instead of using the bard, he decided that a Mickey was a better choice of g-tube for Ethan. It took only a couple days to find out that this g-tube was also leaking perfusely around the site. The decision was made to have radiology take the Mickey out and put in what is called a GJ-tube. This is a tube that bypasses the stomach and goes directly into his upper small intestine, it is called the jejunium. We did that yesterday, and now he is "frothing" at the insertion site. We are all so confused on what is going on, so we decided to take him back down to radiology today to see if posibly the tube was placed wrong, or something else is malfunctioning. No results as of yet!
Prayers are still needed for this feeding issue. Nobody seems to know why he can't keep his food in. Also, we need prayers for controlling the acide levels of his stool to reduce the sevarity of his butt rash. We also would like prayers that he will be able to come home soon. Once he is on a feeding regiment that works, home is just right around the corner. Prayer for Tia as she is sitting behind me right now, trying to put her clothes on by herself in the recovery room after her hernia surgery. And a lot more paryers, but I think I should go help her get dressed. She is wincing and moaning. I am such a bad boyfriend right now!
Love you all!
Take care for now,
- Kip, Tia, Riley, and Baby E -