The Revision

 Well, it's been 7 years...let me catch you up!

Ally is doing amazing!  She just turned 12 and has started middle school.  She loves school and is doing super well!  She joined choir for her elective, which she has enjoyed immensely.  She also loves softball- she started playing baseball around age 4 and switched to softball around 9 years old.  She plays for her school this year and also has been playing travel for 2 years.  She joined Girl Scouts in 2nd grade and has really enjoyed girl scout activities and summer camps.  The past 4 years she has sold over 1000 boxes of girl scout cookies for her troop, earning her pearl status!  She loves to talk and be social, she has lots of friends and has never met a stranger.

Dandy-Walker & hydrocephalus-wise has been fairly uneventful the last 7 years.  At this point, Dandy-Walker has become almost non-existent in her life.  She doesn't have any developmental delays or anything else as a result of Dandy-Walker.  In fact, the only thing Dandy-Walker has done for her at this point is caused her hydrocephalus.

Ally has had the same shunt since the original placed in June of 2014.  She's had several x-rays and MRI's over the years.  We stopped doing annual checks with neurosurgery, since there was never much to discuss- she was doing fine, so it just seemed a waste of time and money.  We were told if she was having any immediate issues to go to the ER.

We had one scare in October of 2022.  Ally would wake up several days complaining about really bad headaches.  Finally one morning she complained so much I decided it might be time to get checked out.  Being only 8, I asked her if she really felt this was bad enough to need to go to the hospital.  I tole her it's okay if it was, but that this was serious and she needed to tell the truth.  She said it was so off we went.  She got an x-ray and MRI, but even as we were in the hospital she said the headache was going away.  This time turned into a false alarm.

This January, Ally started complaining about headaches again over several days.  Finally, one Thursday night she said it felt like pressure behind her eyes.  That was it- I took her to the ER. 

We did the usual, x-rays, MRI, etc. and they still didn't see any swelling of the ventricles.  The only thing the pictures showed was that the tubing from her shunt had come apart right around her collarbone.  Apparently this is very common.  Shunts and their tubing can have scar tissue form around it the longer they are in there, and as they grow it can pull and then disconnect.  She even had a shunt tap, where they put a needle into her shunt and try to measure the pressure and extract some fluid.  They weren't able to get much fluid at all.  Ally's original neurosurgeon is retired, so the new one, Dr. Apfel, said she didn't want to do unnecessary surgery and so we ended up leaving around noon the next day.  We made a follow up appointment with her one week later.

At the follow up, Dr. Apfel said there was a test we could do to see how/if the shunt was working,  They would inject a dye into the shunt, then wait a bit and take images to see if the shunt was flowing or not.  She said there was a chance she could be shunt independent, meaning her body had adapted and she no longer needed the shunt.  This would show if the dye did not flow through the shunt.  However, if it flowed, she said she would want to do a shunt revision since the tubing was disconnected.  I left the decision up to Ally, and she opted to do it, even if it meant surgery.  So I scheduled it for March 18th, because that was an easy day for me to take off work.

On March 11th I dropped off the kids at school like normal and went to school myself.  Partway through my first class I got an email from Russell asking me to call him.  He told me that he got a call from the school nurse at Ally's school, that she was in her office and was inconsolable, complaining of a headache.  When I called and asked to speak with her, she couldn't even talk to me, she was crying and yelling so much.  I knew I needed to come get her.  I arranged to leave school and went to get her.

When I got there, she was on the floor of the nurse's office, somewhat calmer and with a trash can in front of her.  The nurse said she felt nauseated.  As I got her out of the school and walking to the car she did get sick.  I knew right then that she was in shunt failure.  Vomiting for no other reason is a sure sign of shunt failure, and she'd never had that before.

We went straight to the ER.  I was worried about how long it would take (in January everything took a very long time) but we got through relatively quickly.  The hospital had been undergoing construction, so even in the 2 months since our last visit things had changed and there was now a nice drop off area for the emergency room instead of parking in the special underground garage first and going up to the ER.  I let Ally out, clearly in pain (she moaned and groaned the whole time) and the staff that met us parked my car for me so I could escort her in since it was just the two of us.  She found me in triage and gave me my keys and a parking pass with my car's location on it.  We got through triage relatively quickly this time, and got taken back to the pediatric area.  There they put in an IV and she got a dose of fentanyl (which even in her state of pain she recognized and questioned, but the nurse assured her it was safe).  I don't think the fentanyl did much for her pain, but she did get a little loopy.

Of course, the doctor's couldn't take my word for it- they needed images to be sure.  X-ray was no issue, because now they have those portable machines that can come to the rooms to do x-rays.  This was done relatively quickly.  However, we were waiting around forever for an MRI.  While waiting, a member of neurosurgery came to see us.  I explained what had happened, and he said it wasn't likely shunt failure, it doesn't usually come on so quickly.  I wanted to put my foot up his ____, because there was no other explanation- I knew my kid and I knew what this was.

MRI was taking so long, so we ended up with a CT scan instead.  It's not as good, but given her pain and all we just needed to get the images to see her ventricles.  That was done fairly quickly once we got there.  When he came back to give me the results, he said the ventricles did appear enlarged from last time (Shocker, right?) and they were recommending a shunt revision.  I signed the papers and they started getting the ball rolling with that.  I knew Dr. Apfel was in the hospital because on my way to the school to pick her up I called neurosurgery to ask if we could come to them instead of the hospital and they told me she wasn't there, she was in the trauma center.  While we were waiting, this neurosurgeon did another tap of her shunt.  This time he was able to measure the pressure (11- whatever that means) and extract 15 ccs of fluid.  As he did so, the pressure dropped, and her pain drastically decreased, so she was able to nap.

We were finally taken to pre-op, where things once again moved slowly.  The fluid was starting to build back up because Ally's pain got worse.  By the time they were ready for her in the OR, she was begging to go get the surgery done, she was in so much pain.  I kissed her goodbye and she flashed "I love you" in sign language as they rolled her away.  (Side note- March 11th, 2014 was the day I took her home from the NICU- she decided to commemorate 12 years home by revisiting for a shunt revision!)

They sent me to the pediatric waiting room, which was deserted.  However, I had just entered when a friend from college walked in!  I had forgotten she went back to nursing school and was working on the ward I had accidentally wandered into when looking for the waiting room.  I hadn't seen her in several years, so we were able to spend a few minutes catching up.  She left to go back to her station and I waited.  She came back some time later to tell me she looked Ally up and they were finishing up with her.  A bit later a nurse came to get me and take me to her in recovery.

She was awake and reached for me when I got there.  She was able to sip some water (she hadn't had anything to eat since breakfast, and by now it was around 6 PM- we wouldn't let her have water either since it looked like she was headed for surgery).  She talked A LOT.  She entertained everyone around.  When Dr. Apfel came in she asked if she saw how smart she was.  When Dr. Apfel said yes, she responded with a somewhat slurred "I get all As and Bs."  (Which is true.)  It took a really long time for us to leave recovery and get to her room on the pediatric ward.  When we finally got there, we were sharing a room with another girl.  We found out she was from the Harrisonburg area and had her appendix out.  She was close to the same age as Ally.  They were a super nice family and Ally spoke to her quite a bit through the curtain separating the room.

That night Russell's parents came with dinner for me (I hadn't eaten since breakfast either) and Russell and the boys came too.  They visited for about an hour and were thoroughly entertained by Ally's drug-induced loopiness.

We were able to sleep most of the night.  In the morning they brought breakfast.  She was able to eat the cereal but didn't want the pancakes and sausage, so I ate them.  Neurosurgery came in and said she could go home that day, but they wanted to get an MRI to get follow up pictures of the brain/ventricles, so after that, we could be discharged.  So we waited...and waited...and waited...

I tried to help Ally 'shower'.  We just basically rinsed her off and rubbed her down with a washcloth in the shower area of the bathroom on her back and down her legs- she has stitches on her abdomen we didn't want to get wet.  She's very orange, especially on her chest/abdomen from the antiseptic they use in surgery- she said she doesn't work for Willy Wonka, so why was she so orange?  (I'm telling you, she was hilarious.  Getting her wisdom teeth out is going to be very interesting someday!)

Lunch came, which Ally didn't want.  Russell brought her a chicken sandwich from McDonalds, which she ate most of, while I ate her lunch.  And we waited...and waited...(we watched a bunch of movies during all the waiting!)

A friend from our church walked in!  She was a volunteer with the hospital and we were both surprised to see each other.  She had a snack cart where we took a few snacks, and she had a bear for Ally and a small pillow she'd made- cow print on one side, pink minky fabric on the other- like udders (lol!).  Both were very soft and comforting for her.  It was so good to see her, and she prayed with me too.

Finally they told us that MRI was backed up and they would discharge us and we would make an appointment in a week or so to get the MRI done outpatient.  So after a lot more waiting, I was able to get her dressed and go down, find my car, and take our girl home!

She's still moving slow and complaining about pain.  Interestingly, most of her pain she complains about is in her neck, where there is no incision.  I think this comes from putting the tube down her neck- I remember her first neurosurgeon saying that in the OR it can look kind of brutal getting it strung through.  Her second place she complains about is her stomach, where she does have an incision about an inch and a half long.  She may also still have some trapped gasses, which can be uncomfortable and painful as well.  The only pain relief we are using is over the counter tylenol, which to me is very impressive as to her pain tolerance.

They did not need to shave any hair to get to her shunt!  Her head incision is closed with staples, so we go back in a couple weeks for follow up as well as to have those removed.  Her abdominal incision is closed with dissolvable stitches.  

The most disappointing thing I think to her is she is out of softball and gym for a month.  She'll miss close to half of the school season, but with her travel team she plays all through the summer so there's still lots of opportunities.  She also needs to be careful lifting things for a while as well.

For our hydrocephalus families who have never experienced shunt failure, I wanted to post a description so you could have our experience.  Everyone is different, and I've heard several different experiences.  I've never experienced one like this before.  I honestly feel like she's been in failure- or close to it- since that first ER visit in January, and then we had a somewhat catastrophic event that moved everything super fast.  Ally kept saying "why me?" during the pain, and I don't have an answer exactly, except to help other families also dealing with this.

Thank you to our families for helping and calling, our friends (and hers) for praying, and the great staff at Carilion.  There were so many great nurses and people we interacted with while there who took such great care of us.  We'll keep everyone updated on her progress back to normal.