We have been going nonstop since we brought Hannah home on Tuesday. We were fortunate enough to get 11-hr a day nursing on Wednesday and Thursday, and we will get more nursing this weekend (8 and 6 hours), and then 11 hours a day Monday through Wednesday. Then it will be a fight with our insurance company because they only do it to “transition” into the home, but with Hannah’s situation, especially the withdrawals, we need someone here longer.
Nursing has been a godsend to us, and it truly has kept our sanity as we adjust to this new life with Hannah’s new requirements, our new home, and our new city! We had the same nurse for the first two days, and she was fantastic. I loved her. Even better, Hannah really took to her, which was surprising to me because she does not like anyone she does not know! I watch our nurse with her, and she is so good with her, cradling her, singing to her, and just be very loving to her.
I wish we had nursing today. But there was a scheduling problem, so we were on our own today.
We started the Ativan weaning process yesterday. We were at 1 mL 4 times a day originally, and then yesterday we dropped it down to 1 mL 3 times a day. We think Hannah is having a rough time with it. She started with constipation yesterday and a bit of spitting up (which is unusual for her). We ended up giving her a suppository because it had been a couple of days, and she exploded with success.
Today, she had three exploding diarrhea diapers, the last one this evening the worst. She is also spitting up some, and her stomach is getting more. Tonight, after her 9 pm meds (the same ones we have been giving every night for a couple of weeks), she threw them up about 2 minutes after we gave them to her. I’m nervous about how much of her meds came back up because her chloral hydrate, keppra, and klonopin were in that batch!
I called the nurse on duty, and she gave us some suggestions to get her through this period if it is withdrawals, such as adding pedialyte instead of free water and how to look for signs of dehydration from the diarrhea and vomiting. We are also to start her meds an hour early tomorrow morning (which is a duplicate of her evening meds).
I hate watching her go through this. We don’t know if it is withdrawals for sure, but it seems to match everything we ready about Ativan withdrawals.
And as I type this, we just finished cleaning her up again after another exploding diarrhea episode. Fortunately, Daddy just came back from getting the Pedialyte!