Hello from Inpatient

I’m not sure what I’m going to write now… I don’t have a clear “subject” to share. Just… updating our practical situation and maybe a little thinking out loud about how we’re all doing with it.

The flights home
The ER?
Inpatient
Of enemas
looking ahead
Daniel – behavior, emotional state, bonding, development, all that stuff
Family and home

The flights home went really, really well. They were as physically taxing as I expected, not being able to sleep for 24 hours or more, focusing on little Daniel and trying to keep him comfortable, and aching with the desire to be home – in my husband’s arms, in my familiar places, finished with jumping through hoops and in my own home where I make the rules. But… as I watched Daniel sleep on the plane, his face was cast into stark shadows and the sharp lines of his thin face troubled me. That he hadn’t had a bowel movement in almost two weeks troubled me too as well as his bare marginal distance from dehydration.

We had a 2-3 hour drive home from the airport with my family and my emotions were really brittle during that. Thankfully we somehow made it home and tucked everybody into bed. Carrie was estatic to see Daniel at the airport, Anna gave me a big hug and Jordan even smiled a genuine smile for me. My husband’s arms were water on a parched desert. We wanted to settle in as a family and the children had invested in preparing the home for their new little brother. Clean floors since he scoots around and excitement about finally giving him his wheelchair.

But in the morning, we went instead to the ER a the children’s hospital to get help for his constipation. The ER visit was not my favorite… or Daniel’s. With hours of waiting and five pokes before getting blood for tests, and then a suggestion to just go home with Miralax before the GI team heard about us and we were instantly admitted.

Phew, so it’s been Sunday-Wednesday and I now know quite a bit about how this floor operates, about blood draws and Daniel’s veins, about golytely and cleaning out dried up stools. According to the xrays, even Daniel’s small intestine probably had solid stool in it, which is unusual, but possible with the right combination of severe dehydration and constipation. He’s been getting gallons of this stuff poured into him, flushing out all the dry stool. He hasn’t had anything to eat or drink by mouth… surviving on iv fluid that has a little sugar and electrolytes in it.

Daniel slept almost continually for the first 48 hours in the hospital, but yesterday and then this morning, he woke up. He’s not sitting up or scooting about or trying very hard to get at all the wires hooked to him, but he’s alert and playing with some of the old wire leads that were stuck on his chest at some point.

We’ve got a dietitian (or something) carefully planning what to put into his ng tube (through nose to tummy) as soon as he’s cleaned out (hopefully tonight) and we’ll be monitoring through blood draws to make sure he doesn’t refeed. Refeed is a life-threatening resonse of a body that is receiving good nutrition after a significant time of malnutrition or starvation. You have to ease back into it. We also have to be careful to keep his stools soft so that he’s less likely to become constipated again. It’s also on our radar that he may not know how to have a bowel movement without help, such as an enema or suppository, so we may need to help him through that too.

Let’s see – with the xrays and such we found that his diaphram has a fold in it that is likely uninteresting. Also, his lungs show up in the xrays like somebody who has chronic lung issues. So if we ever suspect bad upper respiratory something, we’re supposed to consult pulmonology to be safe. (his lungs sound clear) Hmm… I should ask if that can be caused by frequent aspiration? Maybe that damage was caused by the feeding practices at the orphanage.

Daniel is darling and quiet and easy to love. He permits me to be near to him and I’ve slept in his crib several times. This whole experience is unpredictable for me, and even moreso for him since I can’t explain anything to him. He is coping really well… and I can’t wait to get him home where he can experience the life that is a home and family.

It is hard emotionally on the whole family to hae Daniel’s homecoming suspended like this and to be separated from each other and without a family routine together. It’s going to be great to be home… hopefully this weekend.

Friends and family have stepped up to help and encourage us. My jet lag has been pretty horrendous and I’ve been crawling through navigating all of this. My neighbor washed our laundry for us. My friend took Jordan for an hour and brought me a hug and goodies. My parents watched Daniel so I could nap. Some food is going to be brought to our house to take some pressure off Brian. Speaking of Brian, pray that I’m home this weekend – he has missed a lot of work and there are some things there that are needing his attention.

Okay – without further ado – let me tell the story again with pictures!