We were so happy last week - Meagan's seizures seemed to be under control. It was almost 10 days with NO seizure activity! The Keppra was working!! We had the best smiling picture EVER a week ago Monday... and she was smiley the entire day. It was such a great day for Meagan.
Meagan continued to have a great week... I did notice this past weekend, though, that her shunt site was quite poofy. This struck me as odd because her shunt site had only ever swelled before when she was on a higher shunt setting. This time, she was back at her normal 1.5 flow level.. a setting she had always tolerated well and never swelled or reacted to. She was still acting ok, though, so I just watched it.
Tuesday morning came - I was getting the girls ready to go to school. Meagan had eaten at 5am, and it was about 8am at this point. She was lounging, fussing here and there, but basically happy. All of a sudden, I looked over at her, and she vomited. EVERYWHERE. Even my 5 year old said "EWWW!" I watched her and it happened again - it literally looked like someone had a hose pointed out of her mouth... it was projectile and liquid and A LOT. "Oh no" was my first thought because projectile vomiting is a huge symptom of a shunt malfunction or failure.... but perhaps it was just a random occurance. So I waited... 8:35am... and it happened again. Ok, now I was officially worried.
Otherwise, Meagan seemed "ok" ... so I piled us into the car, and we left to get Kaitlin to school. When we got home, she didn't get sick again....for a while. Around lunchtime, it happened again though. Projectile. Everywhere. As a mom, especially with many kids, you never want that infamous "stomach flu" to come near your home. But when you are a mom of a shunted baby, and the baby is projectile vomiting, you realize how quickly you actually pray it IS "just" the stomach flu. It is better than the alternative.
I decided to call the Neurosurgeon's office that afternoon because I was starting to become concerned about Meagan's shunt now...especially with it being so puffy even on a low setting. I continued with our day, waiting for a callback. Finally, our NSG's PA called me back. She talked to me about Meagan, the vomiting, Meagan's mood/behavior...etc... We both decided that she was ok to watch for the night and come in the next day if she hadn't improved.
Let's just say, I knew early on in the night I'd be calling the next morning. To start off, Meagan had a 4 minute seizure - after not having one for over 10 days. So I figured something was going on. Meagan had a horrible night. She threw up a few more times, and she was extremely fussy. She (and I) slept maybe a total of one hour. Her shunt site was very puffy and swollen and she was eating in shorter spurts. I dropped Kate off at school again and called the NSG office. They were excellent about working Meagan right in for a morning appointment.
After about a 45 minute wait, they got Meagan back for her CT scan. Once it was finished, we walked back across the street to the NSG's office. WIthin a few minutes we were called back to a room again and the PA came in. She went over Meagan's scan with us and explained that Meagan's ventricles seemed to be stable (ie: not growing larger) and she would get the NSG to come in and talk with us further.
Meagan's NSG came in. He was very apologetic for us having to come in - almost as if he felt badly things weren't going "perfectly".... it isn't his "fault" at all, as these things can change in a heartbeat.. however, I appreciated his sentiment. It felt good to know he strived for 'perfection' in his work and didn't want us to be returning with problems.
He talked about her scan with me.... while it showed no increase in ventricles, there was also no decrease compared to her scan back in October. This isn't necessarily a "good" or "bad" thing. Yes, ultimately we'd like her ventricles to shrink to allow more brain growth...but at the same time, some Hydro kids have ventricles that just stay the same. In some kids, they are stretched so much with fluid that they reach a point where they don't shrink anymore. However, it is something to watch because the ventricles staying the same could also mean that they are starting to grow again but we are just a little "ahead" of the shunt problem. So it's really a toss up as to how it will play out (as is the story with Hydrocephalus.)
Her head circumference was up 1.5cm, but because of the ventricles staying the same, he attributed her head growth (for now) to normal growth and said we will keep an eye on it.
The NSG said he was very concerned about Meagan's shunt puffiness. This made me worry a little because you have to understand something - even when I *should* worry about something with Meagan, her NSG is VERY positive. Not one time even since we met with him prior to her birth has he ever used the word "concerned" with me. As a matter of fact, he seems very very careful as to when he applies the use of that word. So when I heard "I am very concerned about her shunt swelling...." it did catch my attention. I filed it away to remember for down the road. He examined Meagan's head and shunt area....and he was able to 'milk' some the fluid out (by pressing his hand firmly on her shunt valve and pushing the fluid down into her catheter). He asked me to continue that at home to see if I could help facilitate the flow of the CSF into her shunt tract so perhaps it will relieve some of the swelling.
The NSG also turned her down again to her lowest setting (fastest flow) ever. Meagan had been at a 1.5 setting early on. Last Fall he tried to turn it up to 2. She tolerated it for a few days, but then started to not eat well and be very fussy. Her shunt site also became really swollen so she had to have it turned down to 1.5 again. At her last neurosurgery check up earlier this month, the NSG had once again tried to turn it up to 2 (because her sutures were severely overriding) and wanted to see if she would tolerate it this time around (to stretch the bones apart again to allow for more brain growth). Sure enough, we were back in the office a few days later because her fontenal was bulging and she was very fussy. Her shunt site had also swelled up a lot, so she was once again turned back down to 1.5 Now, even with Meagan still being at 1.5, which has always been her "comfort" level shunt setting, the site was very puffy and starting to swell again. The NSG said he thinks it *may* be the start of a shunt problem.... But since Meagan is still eating ok and has intermittant smiling and alert times still, in between fussiness, and since her vomiting had subsided, he didn't want to take her back to the OR. This is why he would turn down the shunt even further to see if that helps first. So Meagan is now at the setting of 1...the fastest flow (lowest setting) she has ever had.
The NSG said hopefully this faster flow helps. He said if by chance it doesn't, at least it buys us time so she would be that much older for surgery. He said of course if her behavior worsens a lot, if she vomits again excessively, or if she ever stops eating or becomes listless to call back and they will re-evaluate the plan. He was very thorough and said he was glad we came in. He even held Meagan for a few minutes at the end and gave her lots of kisses. He is an excellent surgeon...and also a wonderful man.
While it wasn't exactly the answer I wanted to hear, it was also a good thing we avoided the OR for now. I appreciate his approach with Meagan....being pro-active but balancing that with a conservative treatment plan. I know if Meagan ever had a shunt emergency, he would act and help her immediately...but for now we're going to "ride the wave" of the shunt functioning properly and see where it takes us in the next few months. I'm really hoping the faster flow helps - but in the back of my mind, I'm preparing myself for Meagan to possibly have another surgery. This was not unexpected, but, nonetheless, it is a lot. Here's to hoping that the wave takes us a gold medal distance. I would really hate to see Meagan thrown back into brain surgery when she is finally doing so well with her seizures and other setbacks she has recently experienced.
Love you Meagan. Stay strong and let's hope we can avoid another surgery, and that this shunt can ride the wave for many, many months to come.