Made of Gray

Settling in with TPN

Holly D Gray7 Comments
On Friday our GI asked when we wanted to go home. I said "today" and he laughed uncontrollably even bending over to do so.....and then said "ok I'll get the orders ready." So one day after getting a central line and a year and a half since we've even touched TPN we were on our way. It's nice to know that our doctors believe in us and our decisions. It's nice to have that support.
The past few days at home have been tough. Yesterday more so than today.

The first night we were home Caleigh did fairly well. We were up and down probably 6 times changing dirty diapers, but in general it was nice to be back in our own bed.

Last night was just terrible. Caleigh screamed, cried and arched her back stiff as a board for hours. She was obviously in pain. I started reading more about scopes and found out that you can have pain from the procedure for up to a week after. Mainly from trapped air. Caleigh also has an incision on her neck where they used a subcutaneous (close to the surface) vein to tunnel her central line. They went closer to the surface because her clotting numbers were elevated and they didn't want to chance her bleeding with a major vein. So she's got a pretty good bruise all the way down her chest. Caleigh's chest also hurts because the central line is brought out to the surface there. To top it all off we are counting 6 teeth that are trying to come in. She just wants to chew chew bite bite and get some relief.

Eventually, she fell asleep on top of me in our bed. We were up and down with dirty diapers, but the screaming was better. Caleigh got some sleep. Mommy & Daddy got none.

We did try Tylenol with no avail, but with TPN & Lipids in our life we will have to stop giving it to her. Both are bad for the liver.

Motrin will only make Caleigh's ulcers worse.

We gave homeopathic teething tablets as well. Nothing seemed to help.

Do you think I can teach her meditation? Yoga? Ugh.

Today we didn't give the antibiotic for bacterial overgrowth that we have been. It's called Alinia and I'm pretty sure it was causing the diarrhea and some of the pain. Actually, I'm pretty sure it's what sent Caleigh's diarrhea into over drive on Tuesday night landing us in the ER. We had only started it the night before. Caleigh has only stooled 3 times today and that is just amazing compared to what it has been.

We continued the new ulcerative colitis medicine, Sulfasalazine. We are supposed to give it 4 times a day by g-button. We just started it yesterday so we haven't seen any results as of yet.

Tonight she is sleeping well so far.

So we have spent the weekend trying to keep Caleigh comfortable while organizing all the supplies connected to the central line.

Both sets of grandparents came out to help get things started and as of tonight I think the supplies are close to being in their place. Organization is key to a good clean environment and that's exactly what we are going for.

We have an appointment with GI on Friday and an appointment with our surgeon on February 10th to talk about our options.

We'll spend this week getting back into the swing of things.

There's a lot to think about and a lot to do in the coming weeks.

Eric and I want to thank everyone for you thoughts, prayers, calls, emails, texts, comments and visits. It means so much to us.
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