Update from the last several weeks

Several weeks ago (while still on IV ertapenum) her left ear started draining green gunk.  I took her to the Pediatrician and he said since she was on such a big antibiotic already he didn't want to add another antibiotic or eardrops.  Infectious disease said the same thing.

I do not know if this fully cleared up or not, but after a day or two I didn't see any more green gunk coming out of her ear.

A week ago Tues made 6 weeks of IV antibioitcs, so they switched her from IV ertapenum to oral (gtube) ciprofloxacin.

Last week both ears started draining.  The left ear was green gunk and the right ear was blood (not a lot, but definitely fresh blood).

I called the pediatrician and asked if he now wanted to do eardrops(since this was the second time in such a short period plus now it was both ears).  He called in ofloxin eardrops for her.  We were doing the eardrops twice a day for a over a week.  The left ear had virtually stopped draining and the right ear was still having some blood out.  The blood had lessened, but it was definitely still bleeding.

Monday they did blood work and it looked fantastic (they have been doing bloodwork once a week since the baclofen pump infection).

I took her to the Dr. on Tues because I thought that was a long time for the ear to be bleeding and be on the eardrops.  He took one look in her right and and said it looked "terrible".  I asked him to define terrible.  He said it was so swollen he couldn't see the ear tube and there were spots he could see bleeding.  The left ear looked infected also.  He said to continue the eardrops for another week.

Since the bloodwork looked so great Monday, they pulled out her PICC line.

Yesterday (Thurs) morning she had a seizure starting at 8:08 AM.  Her eyeballs were bouncing up and down (called vertical nystagmis).  At 8:18 I gave her emergency seizure med (diastat), it did not stop the seizure, so I called 911.

Her breathing and vitals remained stable throughout.

The ambulance came and took her to the local ER.  They gave her ativan.  The seizure did not stop.  Then they gave her Fosphenytoin.  Finally the seizure stopped after 90 minutes.

The local ER called neurology at Primary Children's and they wanted her to come through the ER at PCH.  So they transported her by ambulance to PCH.

She was pretty sleepy from all the seizure meds, so she needed oxygen, but did fine other than that.

They did blood, urine and snot samples.  The snot came back positive for rhinovirus (which is the common cold).  Plus we know that she had the double ear infection.

When you are sick with anything seizure activity can increase.  Her blood and everything looked really good so they really just thought it was the ear infections and the cold.

They wanted to watch her overnight to make sure she didn't have more seizures and to see if they wanted to switch antibiotics.

They did a dose of keppra (seizure med) last night and again this morning to ward off potential seizures.  She cried both times they gave it to her.  It can make you agitated.  I told them not to give that to her anymore.  So they are switching to oral ativan for a few days as an additional seizure med while she is acutely ill.

It was really funny because every Dr. that looked in her ears said they looked really really bad.  Then ENT came by and they said "Those don't look so bad".  But they did want to switch from the ofloxin eardrops to ciprodex because ciprodex has a steroid in them.  I need to remember this and tell her pediatrician next time he says they look swollen.  They also wanted to switch because if the ofloxin was going to work, it would have done it within a week.

She really did fine overnight.  No problems.  This morning the plan was to go home this afternoon ( Fri).

At 10:48 this morning she had another seizure about an hour and a half long.  They gave 2 doses of ativan.  It made her tired the rest of the day and really didn't necessarily stop the seizure.  The seizure did stop eventually, but not right away.

This meant she would need to stay at least another night.

Boo!

The Dr. came in this evening and said that her blood cultures from yesterday grew out staph.  Staph is bad in any form, staph is bad.  However...it did not grow out until 28 hours.  They said they typically consider it a good sample if it grows within 20 hours.  After 20 hours it could be a contaminated sample.  Plus staph is usually sensitive to cipro, which she has been on for a week.  We will not know the sensitivities (which antibiotic will kill it) until tomorrow.  They did repeat blood cultures tonight.

They spoke with neurosurgery because it is possible that her shunt could be infected.  They felt like we should add vancomycin in addition to the cipro.

Ahhhh...I am not prepared for a big complicated hospital stay right now.  I still don't feel like I have recovered from her last one.

Overall she is doing well.