Elias had 2 more episodes late morning, one of which was in the waiting room of Pulmonary Clinic. I think that was part of what bought him a room with a view for the night. Dr Wood, was perplexed, but not surprised by Elias. He is really starting to feel from piecing everything together that it is neurological or as he calls it central interference due to his glazed look and lack of effort when this happens. So Elias is hooked up to an EEG that has an electronic pony tail for the next 24-48 hours. The hope is for Elias to have one of these episodes. Never has a group of people actually wanted a child to stop breathing. Very ironic, isn’t it? Since the clinic episode, around 12:30p he has not had one. This would not be odd because last fall he would do it for a day, then not repeat for 12-14 days. Of course, if you’ll remember, they just stopped and haven’t appeared until Monday. We were admitted into the same room we were in last admission, which just brought back such horrible memories. It was like they were saving it! We were discussing it while we waited in clinic for hours for the room to be ready how this was the longest stretch Elias has gone in his life without an admission. Then we realized it has only been 4 months and 3 days. During that stay, we had figured it up that Elias had spent something like an average of 14 days per month for his short life. Yes we sometimes have nothing better to do when sitting in a hospital. It feels like we had been home this stretch for an eternity, maybe because we never sleep anymore so having longer day, well you get the point. We are hoping that this is not going to turn into one of those elongated tours. There is only a vague plan for the moment, but that will more than likely take more shape tomorrow during rounds and heavily dependant on the over-night “activities.” This is typical Elias though. Priorities are constantly shifting up and down the list. Dr Sutton, Elias neurologist (remember there are 20 docs working for this kiddo) has been wanting to do a long-term EEG for a few months, but was not in a rush to bring him in just for that. Well here we are with a reason to get it done. We also are going to see about pushing the envelop about the potential of a neuro-issue as a possible cause for the hearing issue, as that has been eluded to. So if we are lucky all this will tie together several loose ends, be it a pro or a con.
Elias him self as you can see from the photo above, is doing well. He is laughing, playing, and causing trouble, the typical stuff. It is almost difficult to understand why he is in the hospital (again!). Although, if you lived it from our point of view it would be quickly understood. We don’t like it and we cringed when Dr. Wood said the words, but as he told his nurse coordinator in the room with us, “These guys are probably as good as any nurse we could dream of. They know this kid VERY well and do a good job with him, as you can see.” We felt very honored to have that opinion expressed from a doctor of his caliber. It was a small consultation prize for the punishment, I mean admission (if we can’t laugh, we will cry). It is nice to have a mutual respect with a physician so that the trust works both ways, makes things easier. Katharine had the neurology nurse cracking –up under her breath as she school the Intern on the anatomy of Elias colostomy and fistula issues. She apparently chuckled out loud when the Intern asked her to go over his physical issues and Katharine said, “sure you want me to start at the top or bottom?” That poor Intern learned a lot (his admission) and he is probably at home right now looking up all sorts of things related to Elias. The lack of sleep in the past 48 hours is getting to us in a delirious way i think. Seriously, though other than the extremely frightening episodes that have tested our stress and response actions things are what they are. Not too much different, just not at home, and that stinks. Thank you all for your prayers and concern. There were times last night when I thought to myself, do not let this be the thing that takes him. With all his other issues, including his life-threatening FA, for this to be what takes him. Somehow I am sure people reading this are saying, “how horrible to think that” or “ That is not going to happen to him” but when you are staring your child in the eyes and he is not breathing and your efforts are not helping, and the color is changing to that pale blue/grey with a pulse ox alarm blaring in your ear you have no choice but to face that demon at that moment. It was not something I care to relive ever, but it was impactful! It is easy to look back on it but the stress and fear was indescribable. Speaking of life-threatening FA, sadly we lost another little boy who was undergoing bone marrow transplant. We pray for the family that they can find peace and move beyond this horrible loss.
We will update through the day to what is going on and what the plans may be. Thank you all for your prayers, thoughts, calls and emails. They all help give us strength and energy.