Saturday brought the surprise of Madison’s 24th surgery. She had been doing just fine until she woke up Saturday morning. She drank a little bit of water upon waking but wouldn’t eat or drink anything after that. She was cranky and tired, and combined with the lack of appetite; this led us to conclude we had a shunt failure on our hands.
I took her to the ER at about 4:30 while Julie stayed at home with the other two. Check in was a total breeze, which was a pleasant surprise. The ER at Children’s Hospital tends to be the pediatric clinic for the neighborhood that surrounds it. The times we’ve gone there, we’ve had to wait behind hoards of kids because they have coughs, have low grade fevers or they are just looking to get their general checkup for school. When I got into line, the nurse came over to triage and I told her what was going one. She took one look at the sniffling toddlers in line ahead of us and ushered us into a room in the back immediately. Very nice.
From there it was into the usual hospital groove. Get the music playing for Madison, break out her Snoopy blanket, get wrist bands, etc. After about an hour and a half, they were able to get us in for an MRI so they could diagnose the issue. Around 7:30, one of the neurosurgery residents came by and told us that the images confirmed a shunt issue. The spaces on Madison’s right side looked enlarged and she would need to be scheduled for surgery that night or tomorrow morning. There were a couple of more urgent cases ahead of us, so the exact schedule wasn’t clear yet.
Gia came over to watch the kids and Julie was able to join us at the hospital between 8 and 9. I went to the cafeteria to grab some dinner, and by the time I was back, Madison was confirmed for surgery later that evening. She was getting more and more lethargic throughout the day, and she was pretty much asleep after this point. We were checked into a regular room around 9:30 and waited until surgery time. Surgery finally happened a little after 1am Sunday morning.
After dropping Madison off at surgery, Julie and I went back upstairs to the room to try and take a brief nap. The surgeon came by at around 3 to tell us everything had gone well. He replaced the catheter he suspected was not working. He also replaced the valve that controls the pressure for the entire system. That was done at our request. The old valve was working fine, but it was a magnetic adjustable valve. It was first placed over a year ago when they were unsure what pressure setting to put it at. The benefit of a magnetic valve is that you can adjust the pressure without operating. The downside of a magnetic valve is that expose to magnets (in speakers, toys, kitchen magnets) might reset it without your knowing. Since her setting was static over the entire time period, we asked if we could have a non-adjustable (non-magnetic) valve places so we could stop worrying about magnets and we could stop wondering if Madison was experiencing a plugged catheter (brains surgery) or simply a reprogrammed valve (5 minute office visit).
Madison was pretty tired when we got her up stairs, but then again we all were…it was after 4am. A little before 5, I went home and Julie stayed at the hospital. I got to sleep around 6:30 and slept until about 9:30, but Julie wasn’t able to fall asleep at all.
Madison was in a pretty good mood upon waking and had a huge appetite. She also drank a ton of fluids throughout the morning, despite also getting hydration through her IV. By 1:00 she had turned cranky again and as I write this she has settled into a nap. This could mean one of three things 1) she’s tired, 2) she is feeling some discomfort due to the changing pressures of having the catheter swapped, or 3) the issue isn’t fixed and she’ll need another revision. We’ll know more after she wakes up.
As far as the other two, Gia stayed overnight. She was relieved by Carolina who in turn was relieved by the Langers. Thanks for all of the help. We couldn’t do this without you.