I know it sounds familiar, but Madison had to go back to the hospital this week for more surgeries (#20 and #21). Over the weekend, she vomited once but we had spent the day in the sun so at the time there was a possibility she was just worn out.
By Tuesday, she started to vomit again and showed her signature lethargy that comes with a shunt issue. We called the doctor and had her scheduled for an MRI first thing on Wednesday morning. Her regular surgeon Dr. Wilkinson was on vacation for the week so if something needed to be done it would need to be done by someone else. Dr. O’Neill had just moved over from the Children’s Hospital in Seattle and he was on call for Dr. Wilkinson’s cases.
The MRI revealed that many, but not all, of the spaces in her head were accumulating fluid. The decision was made to replace the catheter on the real left side of her head. She went in for surgery at around 3pm and was out by 5. The catheter had been plugged with tissue that had grown into its holes, which is a common issue with shunts in young patients. Dr. O’Neill replaced the catheter and changed its orientation so it had a better angle in the spaces it was draining. He also moved it 2-3cm to the right, which meant drilling new hole in her head. The old one should heal up on its own.
Side note: we’re teaching the kids about stranger danger which means teaching them about “private parts”. We’re teaching them the real names for their private parts and that no one can touch them for non-medical or hygiene related reasons except themselves. This leads to some amusing outbursts. We were driving back from Colorado Springs the other day when out of the blue Chloe exclaims, “I have a penis!” Madison is still learning the nomenclature and will look at me and say, “Daddy has a peanuts.” Well, after the surgery I was trying to distract Madison from the recovery. I tickled her nose and asked, “Can I tickle your tummy”. She said, “yes..tickle my foot?”. So I did. Then she asked, “tickle my calf?”. And I did. Then she asked, “tickle my leg?” And I did. Then she asked, “tickle my vagina?”…looks like we need to review the stranger danger rules again.
Anyway, she looked pretty good after surgery. Julie stayed with her for the night and everything went well. Madison ate a couple of zingers and some pudding before bed and seemed fine. The next morning (Wednesday), she still looked good and ate a decent breakfast. The plan was to keep her until her last antibiotic dose in the early afternoon and then send her home
Later in the day, however she started to look a little wobbly again. Her right eye was wandering and she threw up again. Julie has been keeping a journal of the play-by-play of each hospital stay and its not unusual for her to vomit even when the recovery is going well. Sometimes just the surgery the changes in pressure in her head can cause her temporary discomfort. Madison spend most of the afternoon sleeping, so we hung out at the hospital until 7 or so when she woke up.
The decision we had was to take her home and let her sleep in her own bed or spend the night in the hospital. We’ve been down this road enough times to know that she would not be critical enough to require urgent care even if the surgery didn’t help, so we took her home. We live 10 minutes away, so even if we were wrong, we could get back pretty quick. We took her home and the other two were happy to see her, plus it meant they could get out of bed and run around for a half an hour. Madison didn’t look great and she threw up again before she fell asleep.
Madison slept the whole night, but we could tell she was not right the next morning (Thursday). We called the doctor and had her scheduled for another MRI. This scan showed that her fourth ventricle had drained nicely, but her lateral ventricles had not reduced in size. Dr. O’Neill consulted with Dr. Wilkinson, who was still on vacation but back in Denver, and he decided to replace the catheter on the back right side of her head. She was readmitted to the hospital (into room 612, which is a really big corner room with a superb view, by the way). Madison got her first regular hospital bed, rather than a crib with side that raise, and she seems pleased with the change.
Surgery was scheduled at around 5:30, and it went well. This catheter was also plugged with growing tissue so it was replaced. By 9:30 or 10 we were back up in her room. She wasn’t hungry or thirsty, but she seemed in a pretty good mood. I stayed and Julie went home this time. I let Madison lounge with me until about 11, then I put her in her bed. She sang songs and chatted for about 30 minutes and fell asleep.
She woke up at 5:30 Saturday morning complaining that she wanted to “crawl into bed with Mommy”, which I couldn’t help with. We sat in the lounge chair for about an hour together and she fell asleep again for about thirty minutes. She woke up at 7:30 in a pretty good mood. She spent the next hour entertaining her nurse and CA by counting, naming medical devices and otherwise impressive stuff for a two year old. I think the CA was a little embarrassed that her 5 year old wasn’t talking as well.
I’ll switch off with Julie for the rest of the morning and bring the other two kiddos back over for a family lunch. Thanks to Gia for coming over and watching Noah and Chloe last night while we were here. I heard they had a hoot.
I’ll post some pictures later today from the hospital stay.