Erica - Week 1

I thought I'd start documenting the past week.  It's all running together in my head.  It goes into some detail, so if you get queasy easily, you may not want to read it.  For those of you getting daily email reports, this contains the same information.

 

Sunday night:

Well, actually Saturday.  Erica seemed fatigued and wouldn't do much.  But she's lazy like that sometimes.  By Sunday night, after dinner, James noticed she wasn't using her left side.  So he did some tests and verified that her left side wasn't working.  So we called a friend to watch the other kids and took her to the emergency room.  Luckily, they let us right in.  The CT scan verified that her shunt wasn't working and pressure was building up in the right side of her brain, thus causing problems with her left side.

 

Monday:

Shunt surgery.  The shunt was working, but was placed so that scar tissue was in the way of drainage.  So it was moved, and everything looked great.  She spent the day in the PICU and was doing fine.

 

Tuesday:

Awake, alert, answering with 1 or 2 words to questions.  About lunch time ate a couple of french fries.  A few hours later, while sleeping, she threw up the french fries.  From then on, she was choking quite a bit and her responsiveness level went down throughout the night.  It was hard for her to breath.

 

Wednesday:

Continued decline.  They put an oxygen mask on her and she was moved back down to PICU.  They gave her treatments for breathing (vapor medicine in a mask) to help her breathe.  She was diagnosed with aspiration pneumonia, brought on by fluids or food going into the lungs.  Had a hard time drawing blood because her veins kept collapsing.  She ended up with 10 pokes for her 2 IVs.

 

Thursday:

A breathing tube was put in.  She went to surgery in the afternoon to place an external shunt in her brain help drain the excess fluid and to measure the pressure in her brain.  After the surgery she didn't wake up.  Her vitals all looked great, but her body looked bad.  A brain MRI and CT scan looked great and showed absolutely no problems - no infection, no signs of stroke.  So statistically, she looked great.  Clinically, she looked awful.  The doctors were stumped, as well as several colleagues that they had contacted.  They put in a IV in a central vein because both IVs had collapsed.

 

Friday:

Woke up in the morning.  She squeezed fingers and nodded her head a few times.  The xray for pneumonia looked a bit clearer, but it could still get worse before it gets better.  They gave her some sedation because the breathing tube seemed to be bothering her gag reflex.  An NG tube was put in to start feeding her through her stomach.  They put a line in her artery to constantly monitor her blood pressure.

Saturday:

Erica was doing a lot better today.  She was moving around more and was trying to lift up her arms, although she couldn't get them past her waist.  But even the effort still shows progress!  She was also a bit more communicative with her yeses and nos.  She did have a problem with sudden spiking in heart rate, blood pressure, and head pressure.  They did a CT scan, but it looked no different than the previous one, so the doctors are pursuing the seizure idea again.  If she spikes again, they will immediately give her an anti-seizure medicine which, if it is a seizure, will show immediate improvement.  The doctors ordered a 24-hour EEG to monitor brain waves, but don't know when it will start because it is a holiday weekend.  She's doing well with the feeding tube and is almost up to the amount they want to give her.  They're trying to wean her off the respirator, to see how she does breathing on her own.  The chest x-ray showed no change in the pneumonia.

The ward has been absolutely wonderful in taking care of us. We have had meals provided and our other children have been taken care of.  They even mowed our lawn.  We thank them profusely for their generosity and support.