This last week

Infectious disease called with the sensitivities for the culture from the ear drainage (that came back as resistant pseudomonas).  Basically they have one option...an antibioitc that they rarely use because it causes liver or kidney dmage (I can't remember which).

They wanted to hold off (for obvious reasons) and see if she gets better or worse.  So I just kept giving eardrops...hoping that they might help, even though infectious disease did not seem to think it would help.

Yesterday (Sat) she had a long seizure.  It was the same kind she had last week (just her eyeballs bouncing up and down (called vertical nystagmis).  In the midst of it we called the on-call neurlologist and ended up giving two separate doses of ativan.  The seizure stopped after about an hour and we were able to avoid a trip to the hospital.

I called and made an appointment with her pediatrician to look at her ears on Monday.  On Monday I was going to call and wriggle my way in to ENT sometime this week.  They had tossed around the idea (while she was inpatient last week) of removing the ear tubes.  Bacteria likes to stick to any foreign body.  So by removing the tubes they may be able to help get rid of the bacteria.

I figured the long seizure Sat morning must be caused by her ears still being bad.

During the night (at 3 AM) she had a seizure where she dropped her O2 to the low 60's for about 3 mintues.  I went back to bed and then about 10 minutes later I heard her cry out.  This is TOTALLY uncharacteristic of Ellie.  #1) To cry...if she cries, you know it is really bad pain #2) for me to hear her cry from the other room...her cries are often silent.

I went in and she was having another eyeball bouncing seizure.  When she was still seizing 10 minutes later, I gave her "rescue meds" (Ativan to stop the seizure).  10 minutes later the seizure had not stopped, so I gave her a second dose.  The seizure stopped after about 30 minutes total (not include the oxygen desat).

I watched her for another 15 minutes to make sure it didn't start back up.  And thought we were in the clear.  That is when she started crying a lot more.

School said she cried twice on Fri and she cried once on Sat.

I gave her ibuprofen, but the crying continued.  I climbed in bed with her to comfort her.  The crying continued.  It seemed that particularly when I would touch her face/ear area she would cry more.  Finally I promised her I would take her to the hospital.

I debated calling the ambulance, or driving the 45 minutes myself since I was slightly concerned about her not breathing/having low oxygen since I gave her 2 doses of ativan.  I decided we could make it, so I drove her.  She did fine on the way down here (to Primary Children's ER).  I did put oxygen and a pulse ox (oxygen monitor) on her to be safe.

When we got into the ER and they transferred her to the bed she had another desat (possible seizure??) where she dropped into the 30's.  That got everyone hopping!  It lasted about 2 minutes.

We had her only on 1 liter of oxygen for a few hours, then it seemed like she was a little more sleepy, so I asked to have her put on her bi-pap to give her a break.

Here are the results so far, from the tests they have run.  The ER dr. said her ears actually look good.  He is very surprised to hear that she had a resistant pseudemonas last week.  Head CT and shunt series (x-rays) (both looking at shunt) both look good.  CRP (level of inflammation) was great.  Electrolytes looked good.  Platelettes and white blood count were low...but not alarmingly terrifyingly low.  They said it could be a bone marrow something or other.  But they were not terribly concerned.

Here comes the funny part...so the ER Dr. says "Well, we'll leave it up to you if you want to go home or stay."  I said "Stay because something is going on and if we go home, we will be back tomorrow."

So then the floor Dr.'s (the inpatient Dr.'s) come down and are worried about putting her on the floor (instead of ICU) because she is so sleepy and is on bi-pap.  I tell them she was doing fine on oxygen I just wanted to give her a break, so I asked to put the bi-pap on.  But they are still concerned that they cannot arouse her.  I say, "Well, she had 2 doses of ativan, has been up since 3 and was cold when we got here (so we had to warm her up)".

I just think it is funny that they were willing to send us home, and then a few minutes later are debating putting her in ICU.

They are going to give her ritalin (that she takes every morning to wake  her up) and see if they can at least arouse her.  (She is SUPER sleepy).

I am fine if they want to put her in ICU, although I think she will be fine on the floor.