Crap

Hannah is back in the hospital.   She has been here since Friday morning.

She had a rough night with pain the night before again.  She looked constipated, and it seemed like not much came out with the enema.  The next morning, as we were packing up to go to her Cerezyme treatment, she was in so much pain she started to get uncontrollably agitated.

We headed back to our local ER that we went to a couple of weeks ago.   All her initial blood work, urinalysis, and x-rays (chest and abdomen) came back normal.  So I asked for a GI consult (since our GI appointment was almost a week away and didn’t want her to wait).   The ER doc told me the only way to get a GI consult was to have her admitted.

I said, “Admit her.”  We need to figure out why she is constipated so much, why she is refluxing and, in turn, aspirating, and most of all, find out what the hell is causing her so much pain.

It has been a helluva rough couple of days since being admitted.  Our GI doc actually came to the hospital, which was wonderful, and we came up with a game plan.  They gave her an enema, which started cleaning her out.   They also ran GoLytely laxative through her g-tube to clean her out completely.

But that wasn’t the horrible part.  It is the pain.  It has gotten so bad that she gets so hysterically upset that she hyperventilates and has even become hypoxic a couple of times.  At first, the hospital doctor (that first day) didn’t want to give her any sedatives because that causes more constipation.  They let her writhe in pain for an hour, and it was killing me.

Are you frickin’ kidding me?  Sedate her!  Give her relief!  I was so worried about her seizing with a tonic-clonic seizure again.

Finally, I got the nurse to call the doctor that was coming on (who has been her doctor since), and she agreed to put her on a regimen of Versed and chloral hydrate.

So she has been drugged most of the past 2+ days.  We try to give her a chance to relax and be awake when the sedatives wear off, but we only get somewhere between 10 minutes to an hour (if we are lucky) before whatever is causing her pain starts her going.

Our GI doc is coming back tomorrow.  We NEED to figure out where this pain is coming from.   She is no longer constipated (at least her x-ray says she is not), and she is on an open vent on her g-tube so there shouldn’t be any gassy problems.  But what is it that is causing all this pain?

Oh yeah, and then there is the whole fundo versus j-tube situation which I will post about later.  Bottom line, Hannah is having surgery for a fundoplication either Tuesday or Wednesday to help deal with her reflux issue.  But the surgeon doesn’t want to do the surgery until we know what is causing her pains and wants to make sure she can tolerate her feeds when we start her back up (understandably).

I was told today to expect to be here at least another 10 days…ugh.

I just want Hannah to be pain free again.  That has always been our goal with her – happy and pain-free.   For the past few days, she has been nothing but miserable and hurting horribly bad.