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!
Argh! This just sucks.
Ugh! I hope you have a decent night. If she threw them up 2 minutes after taking them I am really suprised they didn’t tell you to give her another half a dose. Don’t hesitate to take her to the emergency room tonight if you it gets too tough. (I am sure that will not hurt your bid for more nursing days!) Hang in there!
Oh hon! I doon’t see why they are doing it so fast! Emma went down by mcg and took a year to get off it! That just seems way to fast for her. And just from what I’ve read it totally sounds like w/drawals. Can you ask them to do still the 3 times and maybe go by .5 3 times a day and take a little more time?
This is heartbreaking! Hannah needs for them to slow it down. You and Robert need respite. What is the insurance company thinking??
Hi, Carrie ~ I’ve been following your blog for many, many months, seeing the wonderful life you are giving your Sweet Little Miss Hannah, and I’d like to let you know I’m keeping you all in my prayers. I’m so terribly sorry that this horrific disease has stricken your little one and will ask others to add her to their prayer lists as well.
God’s blessings,
nanawaggs
Niamh started having problems holding things down a few weeks after getting her feeding tube…….just a thought. Glad your all home together xx
So sorry to hear Hannah is having a hard time with withdrawls. I hope she has a better nite, poor baby I hope things just get better for her.Shes been thru enough already, not to mention the pain you guys have to go thru watching her go thru all this.
Damn these insurance companies!
So glad Hannah took to the nurse, that is a God send to have someone caring.
Hang in there, our prayers are with you all!
Susan
I agree on going slower. Cameron was super addicted to fentanyl and versed when he was younger. His withdrawal was awful. He really struggled. I forced the hospital to go slower than they wanted to, but it was still too fast for him I think. If you can, go slower. We alternated tylenol and motrin round the clock and walked him for miles around the hospital floor. He also got benadryl at night to help him sleep. He struggled so much during the day, I didn’t want him to at night. Good luck! This is such a hard thing to watch your child go through!
Oh my goodness, I hope it’s just the withdrawals and that it passes quickly. I’m glad to hear about the nurse and hope that your insurance comes through to realize having a nurse is a necessity for you. It’s really good to hear about the help… prayers for Hannah to get through this stage too.