Yesterday was spent at the hospital for another round of appointments. The day turned out to be a little longer than expected as we think we got lost in the shuffle somehow once we were placed in our isolation room. Our appointment time was 11a and just before 12:30p the neurologist had still not been in. I stepped out to try and find out if they were truly that far behind. I ran into one of the FA coordinators who was actually on her way to visit with us. She was unaware that the neurologist had not been in. Within minutes there she was. It seems as though there was some communication error notifying the doctor that we were there and ready. The nurse checking us in possibly was where the issue originated. All was well except we had a 1:30p cardiology appointment. We did not want to have to rush through the neurology portion to travel to the other side of the hospital for the next appointment. No worries, Robin called over and let them know what had happened and everything was fine. I think the hospital could really take some notice of the FA clinic and particularly the nurse coordinators and how efficient and smoothly they make everything for families. They could certainly use some of that magic and skill in other areas of the hospital. While as you just read everything doesn’t go perfectly, but it is how they respond and handle those situations that make you sort of forget and not worry because everything gets taken care of, even with other disciplines outside the clinic. It is truly amazing.
The neurologist thought Elias was quite a cutie. He was a little ham and put on a pretty good show. We discussed some head, eye, jaw, and mouth movements that appear cute to most, but have been very concerning to us. While we expressed we did not feel they were seizures we wondered if they were being triggered somehow. She noted with the hearing issue that it could be the brain trying to gain sensory input through these episodes. She gave us some things to watch for and to try when he does them in the coming weeks. His response will provide input for potential outcomes. She was very pleased with his development, tracking and attention. Overall she had very positive things to say. She would like to schedule an extended electroencephalogram (EEG) sometime in the future, but nothing pressing. Elias had an abbreviated one in September when they were ruling out seizures as the cause for the apnea episodes he was having at the time, but the goal of this one will be to capture the activities we are describing to try and determine what stimulus is coming from the brain that is causing this, be it a positive or negative. She also said with Elias’ malformed right ear he could be reacting in a way like we do when we have water in our ears. It feels funny, doesn’t necessarily hurt, but it is different and we want it out. We do not know how that feels to him so that is another possibility. It was good to hear there wasn’t overwhelming concern and that Elias was performing wonderfully. Cardiology was actually a breeze. They did an EKG on Elias as a formality. The main reason for this visit was to have a cardiac doctor examine him to determine if pre-surgery prophylaxis was still necessary. It is not as the VSD appears to now be closed and the murmur eliminated. The only thing he mentioned was that Elias has an abnormal bicuspid aortic valve. The main difference is typically there is three leaflets, in Elias there are only two (see image). This really is not an issue nor should it be one in the future. Just something to know, be aware of and have checked on periodically. That of course is another positive along with the date of our next follow-up, in one year!!
We had to fire our night nurse today. This was actually long overdue, but we were trying very hard to make it work. We just could not bring ourselves to lower our standards for Elias. Not to mention the fact that he simply doesn’t understand the vent and that kind of defeats the purpose. Not sure how long we will have to go without a replacement, but I had a 90 minute conversation with the agency today about being creative and more proactive in their staffing techniques. They agreed that things are not going as smoothly as they hoped. We will see what this yields. Overall, Elias has been doing pretty well. We still have a few more photos from thanksgiving to share as well as the Christmas photos, which was pretty low key and relaxing for us. Elias is becoming increasingly fond of being in the “crawling” position. He still hasn’t figured out how to do it yet, but he loves getting up and down. It will only be a matter of time I’m sure! We have a busy few weeks ahead of us. IGIV, doctor appointments and his next round of tag team surgeries and ABR as well. We obviously are anxious about a proper ABR and some insight on a plan for hearing intervention.