Well to begin with this evening I am pleased to announce that Elias got his Synagis shot this afternoon! The new Attending Pulmonologist is actually someone we had met before and enjoyed. He has a very knowledgeable bedside manner that is direct and seems open. He spent some time evaluating Elias post episode this morning and interviewed us diligently about the history with the new Fellow. He gathered quite a bit of information and said he was going to review all of the previous bronchoscopy videos and talk with Dr Wood a little. He seems intrigued that Elias is having these episodes on all the different methods of support and lack of. He also seemed interested in some of our observations about Elias on the ventilator. While he understands the plan at the moment is that we are waiting on the nursing and other home resources to materialize, he seems not to want to stand idle by taking this opportunity for tweaking the plan to provide the safest environment at home. He too commented on how well Elias was thriving and not being able to quite understand how from what he has seen on the inside. So far so good there has not been another episode, but Elias went from being his normal playful self to very grumpy. It has been an up and down kind of afternoon for Elias!
The day also brought on a bit more bad news. This time from audiology. Last week a consult had been placed by ENT to have Elias fitted for a bone conduction hearing aid. We would then follow up with the ear specialist once we get outpatient. The doctors informed us today that the ABR we had fought so hard to get in Maryland, was not detailed enough and therefore could not be used to fit Elias with a hearing device. We have not had the opportunity to speak to anyone directly about this, but it doesn’t surprise us. We had hoped deep down it would work, but expected them to want their own ABR. Now in addition to that they are telling us the one we do have was not done well. We are beginning to ask ourselves was ANYTHING done right in Maryland? It seems like everything we have done has had to be redone. We don’t honestly believe that mind you but with the way everything has gone you can not ignore the thought. We will say in regards to the ABR the audiologist was less than enthusiastic about doing it during a surgery session, so we would not put it pass them to have done it half-hearted. You may remember that it actually took the state of Maryland intervening and demanding that UMMC do this as it is a state mandate that they allowed to go for so long incomplete. To add to the news because of Elias current respiratory status an ABR, which would need to be done under general anesthesia, would be considered elective and therefore not deemed safe as a stand alone procedure. They will need to coordinate it with the next surgical date, which at this moment is up in the air. Tentatively the next surgery would be another bronchoscopy, but they are not wanting to do another until after the first of the year. So we are looking at another three months! The real issue is studies have shown that early intervention with hearing impaired children can actually negate any developmental set backs, but it is recommended to begin by age 6 months, Elias is now almost 18 months. We are losing valuable intervention time and the ability to close the gap on any potential delays that can occur if we continue to wait. While he is amazing and does so many things he should not be able to, if you do not even give him the tools to succeed then you do not have the ability to be amazing! That is all we are trying to accomplish, getting him the tools, he will do the rest as he has proven over and over again. It has simply been ridiculous how difficult it has been to get a child with a known hearing disability the proper treatment. I do not know how much harder and aggressively we can advocate or seek out the answer! As always we will continue to tirelessly pursue and advocate for Elias! Despite the constant hurdles, set backs, new issues, and ever changing scenarios we will not stop or become discouraged. True we may feel disappointment and hopelessness at times, but that is not reflective of our overall drive and ability. It is simply difficult to understand why it so hard to get the tools and assistance that are actively in place in children like Elias!