The Week of Misery & what became of it

 After the week we've had, and the week we're about to have, it was time for an update.

Ally recovered well from her shunt revision in March.  Dr. Apfel took her out of school for 2 weeks, but by the end of week one she was going crazy.  She would email her teachers, who would let her know what work she needed to do to stay caught up.  Sometimes Ben brought things home to her and delivered work back to the school.  The last few days of her second week out were during spring break.  On that Wednesday we had her 2 week follow up appointment with Dr. Apfel in clinic.  She had had an MRI done the previous week to be able to make sure everything looked okay from the surgery.  Dr. Apfel said that everything looked fine, including both incision sites, but her ventricles were measuring small.  She wanted to adjust the shunt setting from a 4 to a 5 to allow it to drain less and increase the size of the ventricles.  So we did, and we left.

Ally went back to school the following week.  She did fine and had no issues.  On April 8th she was cleared to go back to sports and gym class, which she also did without any issues.

I was getting ready to make a new blog post about her recovery, but wanted to wait for one last appointment.  Since they adjusted the shunt setting, Dr. Apfel ordered another MRI to get images of what the brain looked like on the higher setting.  We did this on Wednesday April 29th, saw Dr. Apfel in clinic afterward, and went on to live happily ever after.

Until Sunday at 3 AM.

I woke up hearing Ally wimpering in her room.  I went in to ask what was wrong and she said her head was hurting.  I gave her tylenol and laid in bed with her, but over the next hour her pain increased and got more and more intense.  I finally asked her what she wanted to do, and she wanted to go to the ER.  So off we went.

We got to the ER a little after 4 AM.  We were taken back to the pediatric unit and went through all the usual stuff- seeing the ER doctor, then they consult with neurosurgery while giving her something for the pain, and then getting an MRI and shunt series X-rays.

We were there for 8 hours doing all of this.  As we were there, her headache got better, so with nothing showing up on the imaging we were sent home.  I told Ally that next time, we would just stay home and ride out the headache, as there was an eventual end to it.

We didn't have to wait long.

The next night I woke up the same way around 2 AM.  I spent the next 5 hours trying to help her manage the pain.  Honestly, I felt like I was coaching her through labor.  Her pain would ramp up and she would want to cry and yell, which I would remind her to breathe instead, and then it would die off, only to start again 20 seconds later.  She also vomited a number of times through the night.  By morning, we were both exhausted.  I got a sub, got the boys up, had Luke drive himself and Ben to school, and went off to school myself to get my sub plans together.  By the time I got home around 7:30 Ally was asleep.  

At 8 I called the neurosurgery clinic and explained what had happened.  I asked if there was any way we could come in today to get her shunt adjusted back down to a 4.  My theory was that moving the shunt up to a 5 to drain less was causing the pressure to build up quickly, causing the intense pain, and then taper off when the valve released the fluid into the tube.  I hoped moving it back to a 4 would solve the issue.

Dr. Apfel wasn't in office that day or the next, however, the nurses and staff there recognized the urgency (it didn't hurt that I called several times) and got in touch with her at home.  She agreed that adjusting the setting should happen, and we were sent to the clinic to see a nurse practitioner in neurosurgery to adjust the shunt back down to a 4.  She felt some relief right away, though still had an underlying headache but nothing like she'd been having.

She slept through the night Monday night, so the next day I got her up to go to school.  However, she did complain that she still had some pain.  Since she was scheduled to take an SOL that day, I decided to leave her home in order for the pain to subside completely before heading back in.  Luke did not have to be at school until a little after 11, and Russell's parents came over for the rest of the time to be with her.

During the day she had pain off and on, but did ok.  We had an appointment scheduled with Dr. Apfel the next afternoon since she did not do the shunt adjustment, just so she could see everything for herself in person.

The night was ok, Ally got us up a few times with pain but we were able to give her tylenol or ibuprofen and she would go back to sleep for awhile.

The next day, since she still had pain and had the afternoon appointment anyway, Ally stayed home again with Luke, and then I took a half day and came home to take her to the appointment.  When we met with Dr. Apfel, we told her that she was still having pain and nausea.  Dr. Apfel said that she wanted to try to control symptoms, like nausea, dehydration, etc. because that may be what was making her headaches so bad.  We got Zofran for her (she actually took it in the ER Sunday morning, so I thought there was some merit to this idea because that headache did go away eventually) and I was determined for her to stay hydrated and try to eat some and get rid of the nausea with the Zofran.

The night was not great, so she stayed home yet again.  It was my day to travel between my 2 high schools, so I stopped at home to check on her.  When I got there Russell and his parents were all there with her, and she was in pain yet again.  I left to go back to school but called neurosurgery, asking them yet again to let her come in and to move her shunt down again to a 3, as that was the only thing I could think that might help.

Russell took her to the appointment.  While there Dr. Apfel not only moved it back to a 3, but tapped the shunt as well.  Tapping the shunt can do 2 things- 1. It can help you test the pressure in the head and determine if the shunt is working- it was; and 2. Pull out fluid to be sent to the lab.  Dr. Apfel sent some fluid to the lab to test for infection that she was suspicious might be present and said she would let us know the results hopefully that evening.

Right after school I had an event to go to.  I was gone from 4 until about 9.  During that time Russell texted me that Ally was warm, and when he took her temperature she had a fever of 101.  Toward the end of my evening, he texted that she was asking for me.  I was leaving anyway, so I went straight home.  

After being home for about 20 minutes, I got a call from Dr. Apfel that the fluid definitely showed infection, though the cultures had not come back yet so they weren't sure what exactly the strain of bacteria was.  She wanted her to start antibiotics right away.  Being 9:30 at night, we had to have them called into the hospital pharmacy since no retail pharmacies are open that late.  I went and brought them home and started her on them right away.

She had an okay night, woke up a few times with pain but nothing too crazy, so I was hopeful that the antibiotics, once given some time, would clear everything up and she'd be good to go.  She could get through 4 out of 10 days of the meds by Monday morning and be ready to join the world.

Saturday morning at 4 AM she woke us with headaches and nausea again.  While she was with Russell and I in our room all of a sudden she kind of stared off into space with a funny look on her face.  When I asked her what was wrong, she said things looked 'funny'.  I said was it blurry, and she said no, it was kind of foggy, but not foggy, just really weird.  I knew right then that we had to get back to the ER pronto.  Vision changes are a big sign of shunt issues, and she had never experienced this symptom before.

We got to the ER around 5 AM, went through triage and back into the familiar pediatric ER unit. (4th visit in about 5 months!)  It took awhile for them to get over to us, while she laid in the bed moaning and groaning.  I went out twice asking if/when someone was coming to see us, and finally the doctor came in, apologizing because he was getting caught up on her history/charts. (I mean, we went to neurosurgery 3 times that week and had been in the ER not even a week ago, not to mention the revision in March, so...yeah.  Fair.)  He asked questions and did an exam and told us that neurosurgery was aware we were here and were on their way down.

After a bit, a resident came in and spoke with us.  Dr. Apfel was not on call that day, it was her partner Dr. Kline.  From everything they had done for her over the past week, it appeared to them that the infection had really taken over.  The shunt was infected and therefore had to be removed.  

We met Dr. Kline as well.  I can't remember which doctor told us what was going to happen, but it was extremely unexpected to me.  All surgeries have a risk of infection- as much as they try to make ORs sterile, bacteria and germs are just everywhere.  For whatever reason, shunts have one of the highest rates of infection of all surgeries- 7%.  Ally rolled the lucky dice on this one and her shunt became infected.  Not only that, the fact that the cultures took so long to grow suggests that it's a very slow moving bacteria- 'smoldering' as Dr. Kline put it- no obvious signs like pus drainage, redness at the incisions, etc.  However, the infection had become bad enough that the shunt would need to come out in order to get it under control.

However, you can't just remove it and put in the new one right then and there- that would be pointless, as it would immediately become infected as well.  So, we are in a 3 part series to wellness at this point.

1. Remove the infected shunt.

2. Put in an external brain drain (I'm sure there's an official medical term for this, but this is what I'm calling it) while antibiotics are given and the infection clears.

3. Put in a new shunt (and hope this one does not become infected).

Stage 1 was completed early this afternoon.  Dr. Kline did the surgery to remove the shunt from March- all 3 pieces, the catheter into her brain, the valve outside her skull, and the tubing going down her head and neck and into her abdomen.  She did great as usual, and this surgery did not take long at all (about an hour).  They did not have to make an incision in her abdomen, just her head since they were simply removing all the pieces.

Stage 3 will be completed in a week or so, once the infection is clear with antibiotics.

This means we are now in Stage 2, which honestly is probably the worst of all (though the other 2 are certainly not fun).  Having an external brain drain means that she cannot leave the hospital- it requires specialized nursing care.  It has to be monitored at all times and she has to be very careful when changing positions and checked each time to be sure the pressure is still ok (though she is allowed to get up and sit or walk, she just has to be helped by a nurse).  The fluid has to be collected each day and tested, and when it is clear of infection she will have the new shunt placed.  Also, being in the hospital allows her to have IV antibiotics, which will work much faster that taking them orally.

So, here we are, in the PICU.  She will be here for a week give or take, when she's cleared for surgery to have the shunt put back in and she's not wheeling a drain around everywhere she goes like an IV pole.  She is truly a trooper and is doing so great.  She was able to eat some dinner tonight- almost a whole hotdog and a slice of red velvet cake (she has not been able to eat much all week with the nausea).  She's been joking with the family and the nurses some as well.  She really tries not to complain too much and is always thanking the staff who help her and bring her things.  We only have 13 days of school left, and with a week in the hospital and then 2 weeks of recovery after shunt placement surgery she won't get to go back.  She's incredibly sad about not seeing her teachers and friends, as well as missing out on some fun end of the year activities, like an ice cream party in math and choir Olympics (which she was apparently a team captain) and end of the year banquet for both softball and choir. 

I will definitely be putting up a new update as we move through stage 2- so stay tuned, and thanks to all the family and friends who have reached out and are praying for her.  We are truly thankful.