Thursday, March 10, 2011

March 10th

Matthew is (once again) back in the hospital It just continued to escalate everyday with the amount of vomiting he was having; and when we took him to see his pediatrician on Wednesday, he had been just shy of 24 hours with out any urine output. She gave us the "go to jail, go directly to jail, do not pass go, do not collect 200 dollars" pass, straight to Childrens'. We were at least given the option of going by ambulance or car, which I chose to drive him as he wasn't vomiting at the time. (I had turned his feeding pump off 4 hours prior to his appointment, because I couldn't handle listening to him retch one more time).

The plan?? Put Matthew on TPN, which is nutrition that he will get in IV form. He has a port, so we will use that to give him his TPN. They are saying his gut will need a 6 month rest. 6 months is a long time. He gets 1 bag a day, and the cost....wait for it....$1000 a day! Thats some expensive gourmet! They tell me this will allow his gut to rest, and hopefully we can start feedings again after that; very, very slowly, of course. I do know that plans could change a million times between now and then, but that is what they say today.

I miss my kids, the normalcy of what people would call a boring day; you know doing laundry, vacuuming, making supper; that kind of stuff. I am praying for normal (or as close to normal) days soon.

If all goes as planned, we may get to go home sometime around Monday. I would really like to go home Sunday, as my kids are on spring break this week.


Anonymous said...

Jill and Steve: We continue to think of you. Praying, praying that Matthew can be comfortable and that you can both return home soon. I am thinking Spring is coming and some of these "bugs" that are around: flu, infections,etc. will be gone. I wonder if Matthew doesn't pick some of these up and they just complicate the whole system. Hang in there girl. Call if we can help in any way. Love Aunt Delores

Diane said...

Oh Jill, this has been a long journey for you. Hang in there. I pray that you are home with Matthew soon as a family and can get back to normal.

And holy cow, that's some expensive grub!!

Shannon said...

I am so sorry to hear this. I will be praying for you and especially Matthew that he tolerates the TPN and his body gets the rest it needs for the next six months.

Anonymous said...


I read this mom-blogger - whose child has been on TPN twice.
Her daughter is doing pretty well right now, but she has posts in her archives just on feeding.

Gretchen said...

Matthew amazes me, what a will of steel and strong composition he has! I am so, so sorry that he has to go through this, and you too. However, there is so much to be thankful for, he is a strong little man and he will come through this, we are praying so hard for him and you and the kids. You remind me, as I look as my own pile of housework, to be thankful for it. We look forward to hearing you are home and he is stable.

very very blessed said...

This is a great testimony. Know that you and your husband are special people.