Ayden absolutely LOVED his time in the pool this summer, but did not care for staying home much. In August, the itch to return to school was definitely there, and he is very happy to be back. The kids took their last swim in our pool for the season last night. We really enjoyed our summer as a family, and I found more times than not Ayden and Nessa were PLAYING TOGETHER!!! Yes, this is actually something that used to be pretty rare so I was very excited to watch. I was home all summer, no 4-H judgings, no cheerleading, and very little time at work. I simply turned them all down this year and learned to say "No". Being home with Ayden rekindled the desire to stay on top of all his needs and address some things that had been ignored. This may sound odd to parents of healthy kids, but I know my SN mommas understand. We started in June with a fitting for new braces (something I put off for months to avoid taking more time off). I started keeping track of his activity, food intake, lethargy, and when Ayden would melt down. We went to see Julia each week at therapy, and finally received his new orthotics and wrist brace the week before school. I tried to fit EVERYTHING into the summer, but July did not go as planned and we are now getting ready to hopefully solve a problem that has been brewing for a long time.
When we went to Children's in March our team said we had two problems and at that time we fixed one, the new seizure onset. Although Bub is a little unsteady(common side effect of the med), he has not had more than a few breakthrough seizures a month since March. That is far better control than we had in January and February. It is not seizure free, but there are still a couple meds left before we explore another surgical option or the VNS. The second problem we had was Ayden being extremely tired within hours of waking up. He becomes very tired, moody, cranky particularly at 11 AM and 5 PM(Yes, even with food in his belly). Dr. Lew explained that the shunt Ayden has drains anytime he is upright. Given the pattern of what we see we are guessing he could actually be "over-draining" daily which is why he is so happy in the mornings and fades as the day goes on. There is no real way to be sure that this is the problem, and we knew it was secondary this spring, so we waited. I called this summer with the data I had. On Thursday, we will revise the shunt with a device that prevents the draining due to position. It is actually a pretty simple outpatient procedure.
If it is that easy why did we wait?
Yes, we decided to remove half of our child's brain, but he was seizing like crazy and fading fast. This time around the risks vs. benefits are not cut and dry. Ayden is and always has been asymptomatic. Beyond gut feelings he usually gives little to no signs of problems as we have learned the hard way too many times. We are taking the chance that this is what he needs and that his old shunt will continue to function properly(hopefully even better) after the procedure. The last time he was flown to Cleveland he had been doing so well in the hospital we were talking discharge the night before he crashed. Then again at CC in the ICU we watched him slip away a second time with little to no signs. Our neurosurgeon in Wisconsin wanted us to stay "in town" for a night after the procedure, but we are already taking two days for follow ups with our Neurologist and then the surgery the next morning. The concern is simply: When we go home what do we do IF there is a problem? This was another question we needed answered and our pediatrician is confident he can get us somewhere to get help quickly(since Milwaukee is just a little too far for a transport).
If this works his typical 12 hours of sleep a night should be enough to last the day without him becoming too tired or cranky. It may help lessen some of the sensory seeking he has been doing more of lately, and help him grow even more. We really do not know what the right choice is, but we have waited long enough we have to TRY to do something.
Last January, we left a facility and doctors that we trusted for years because we knew we had to do SOMETHING. Two months later, our son's seizures were decreased by 70% and are now very minimal. Within 24 hours, I knew we made the right choice, this time we are hoping for the same positive outcome.
Your prayers would be appreciated on Thursday morning and the days after. I will be the overly sensitive and worried momma for awhile until we are out of the woods and feel confident again.
