Seizures, Hospital Stays, MRI’s and still no answers…
As some of you are aware, David had been rushed to the Emergency Room on the eve of our blog event starting and was admitted in the wee hours of the morning which led to a bit of a jumbled and confusing mess on some days over here on both the blog and the Facebook page. The ordeal was frightening and difficult to say the least, but it still had its bright moments.
One of my favorites is one the boys even still remember and get excited about (sorry no pictures though). It was when their new babysitter had found out about David and that we were all up in the hospital and he stopped by for a surprise visit and simply spent time with them. It was the best part of the whole time there because for a moment in time, David was no longer a critically sick child, Joshua was no longer a trapped little brother for lack of having somewhere else to go, and I was no longer a worn and weary mom trying to keep a brave face on for my kids in the midst of chaos and change. For that precious afternoon, we were just a mom and two kids again. And David and Joshua were just two little boys enjoying time with one of their favorite people as he read them stories and played with them. : ) The balloons he and his dad gave them right before leaving were quite the blessing too as it kept David and Joshua smiling and playing for days after in spite of all that was going on. 🙂
There were other beautiful moments too while there as well as beautiful people. Moments like a nurse seeing David’s desperate need to just get out of the room (after 3 days of being trapped in it) and so she pulled some strings and gathered a volunteer so that he could go play in the play room down the hall. A staff that saw through the paperwork, tests, and hospital accessories and stayed focused on the human beings behind it all to help ensure we didn’t get buried in it or forgotten. Cleaning crews that gave a lonely mom someone to talk to every morning and did so with a smile on their face. : )
There were also some difficult times too though as I am sure can be considered a given. Things like the terror in David’s eyes and voice as he doesn’t understand the needles (sedations before tests), the probes, the medicines, or even the blood pressure cuffs… The late nights of watching him like a hawk as he continues to go back and forth between being ok and spiking in fever and more seizures… The numerous tests and the countless results that came back different than expected, some even adding to the confusion and mystery… The nights were David would escape and had to be tracked down and brought back several times (no way to secure him into the room so he got out quite a bit the last two nights after waking up while Joshua and I were still asleep)…
I think the hardest part of it all was when I had to take him back in on Monday for an MRI. Poor David only understood enough to recognize a pattern of deep-seated terror rising back up inside of him due to familiar machines and faces (sedation time) therefore setting off a painful scene of honest terror and passionate pleading for me to “rescue” him as I had to instead brace him through it… That tore my heart to pieces and it still brings tears to my eyes to even remember it…
We got through the sedation though and successfully got through the test and quickly entered the famous “waiting game” for the much sought after and anticipated results. The doctors said the MRI was necessary because they were trying to find not only the source of David’s seizures and possibly their history, but also the source of his unexplained and rather frequent (and often severe) regressions that go beyond what’s normally to be expected with Autism. Of the things I was told they were looking for were scars, rips/tears, and malformations, uneven development among the gray and white brain matter, and even possible growths, tumors, and the like. To say the least I was scared pretty speechless and wast struggling with waiting for the results. Praying on one hand that nothing would be found to be wrong and on the other hand just praying that we can finally have answers and that they will point to solutions.
Well… the results came back finally. Absolutely nothing was out of the ordinary on David’s MRI. As picture perfect as if it had come out of a text-book instead of from a test result done on a child struggling with seizures and regressions. The findings (or lack there of rather) are a celebration in one sense because of course I don’t want anything to be wrong with my baby’s brain, but on the other end this means there are still no answers at all which is limiting our ability to find solutions to some very real problems.
The only thing we have left to work with is something the doctors don’t even know how to pursue yet. One of the many tests that were done on David included one that had to be sent off to the Mayo Clinic because of its rarity. Inborn Errors of Metabolism… and one of them came back abnormal… Not a good thing in any light, but no answers as to why, how bad, or what do we do now???
I will keep you all updated as I get more information. Thanks for all the support and encouragement that has been sent to us through all this. It’s all very much appreciated. 🙂