Archives for July 2010

Hannah has been in the hospital since Saturday.   I just talked to Daddy, and she has been doing really well over the past two days!  She is tolerating her feeds well, she is not throwing up anymore, and she looks good.  Even better, she is almost done with the Ativan withdrawal!

As for me, well, her virus got me as well.  I spent the last 24+ hours pretty much asleep in bed, dealing with the same symptoms she had (just not as severe as she had!).   I think my body just has been so exhausted over the past couple of months, not getting any real sleep, that it just took hold of the opportunity to get sick and knock me out.    Even though I still have the “symptoms,” I am mostly just incredibly sore all over my body.

The worst part?   Kenny, one of our dogs, got out yesterday morning, and I got a phone call from a walker who found him about 1/2 mile away from our house!  He met me at the corner of the main street, and I was so dang appreciative.  As soon as he was out of site, I threw up all over the sidewalk, nice huh?  I’m so glad that it was really early in the morning because I didn’t see any cars!   Glad no neighbors saw me walking back either, would not want to meet them this way!

Daddy has been with Hannah for the past 36 hours, thank goodness.  I really, really hope she can come home today.  She has her first Cerezyme treatment tomorrow with a GI followup on Thursday and Neuro on Friday.  Not to mention, Pulmonology on Monday, and meeting our new pediatrician on the 16th!   She will definitely be “monitored.”

Yesterday was very rough.  Quite a few exploding diapers with water diarrhea and a couple of times, she spit up what she was being fed.

Our day nurse yesterday never commented on it, and looking back, there were so many red flags that he should have caught and should have sent us to the ER immediately in the late morning after what we had been telling him was going on.  That being said…

Last night, we were giving her dinner through her Gtube.  About halfway through (about 100 mL over 30 minutes), she spit it all back up.   She became pretty lethargic after that.   It was at that point, we decided to get her to the ER.

Once in the ER at Sunrise Childrens (where we were just discharged from 5 days ago), they took her into a room immediately.   She was dehydrated, and her belly was quite extended.   The doc did a full workup on her including CBC, metabolic panel, chemistries, etc., as well as getting chest and abdomen xrays to see if there was a bowel obstruction causing all of this.   She also had a fever of 103.2, so she was given tylenol.

We kept bringing up the Ativan withdrawals, but everyone we talked to did not think it was related to the ativan.  In the ER room alone, she had 4 exploding diapers.  It was almost a joke because we kept having to get a nurse to help us change the linens or get new blankets or diapers or something.  Thank goodness we brought her meds because we were able to give her 9 pm and 11 pm doses on schedule.

Even though Hannah’s chemistries were relatively good, because of her condition and just recent discharge, she was admitted last night for IV fluids and bowel rest.   Her admitting diagnosis was “viral gastroenteritis.”

After getting settled in a room back on the 4th floor around 2 am, she ended up with one more exploding diaper.  She woke up at 3:30 am, completely awake and restless.  I stayed up with her until 6 am, but finally I had to wake Daddy up at 6 am to take over because I just could not stay awake.

When I woke up around 7 am, I overheard him talking to the residents about when her last diarrhea was.  Apparently the resident was pressing on her belly, and sure enough, another exploding diaper!   It became a very easy question to answer at that point.

What was a wonderful surprise was that after that last exploding diaper, she crashed.  Peacefully asleep for almost two hours!  Obviously her stomach was really bothering her all night long.   She had one more little diarrhea diaper (didn’t explode), and that was sent off for cultures.   After that, she napped for more than 3 hours.  This is most she has slept in weeks!

Sure enough, the “rapid culture test’ came back rotavirus.   So we just have to “ride it out” with IV fluids, bowel rest, and to try and get her fever and heart rate down.

The only possible bright spot is that maybe none of this was related to the Ativan after all…. (and yes, we are continuing to wean in the hospital!)

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.