Who doesn’t love a delicious cone full of sweet, creamy, soft-serve ice cream? All the better if it’s a swirl cone especially for those days when you can’t decide between flavors. Anyone who knows me, knows I LOVE ice cream, and today I can’t think of a better analogy for my overall take-away from our appointment at Children’s. Though it’s true that my brain feels soft and mushy from all the information and just a tad swirled…that wasn’t really where I was going with this analogy. It’s the reminder that often both good and hard things in life are swirled together, impossible to separate, yet somehow tend to enhance each other.
Our wonderful ENT spent an entire hour with us…after a full conversation with our pulmonologist about Aaron yesterday. To say we felt valued, heard, and SEEN would be an understatement. Your prayers were definitely answered and I feel like I communicated very effectively both the raw data and the overall impact on our family. Dr Johnson came into the appointment prepared, listened carefully to what I had to say, and shared that he feels that if Aaron has improved from last year to this one it is barely measurable, and we are NOT where he would like Aaron to be. While this might sound discouraging, it was honestly a huge relief to me that he is seeing the full picture, and while Aaron has grown stronger and is managing better in someways, his clinical situation is not much different than last year. Dr Johnson even used the exact words I have used several times this last month describing our situation as a “knife’s edge”. Clearly not the stable, thriving place we are aiming for.
Dr Johnson agrees that Aaron’s situation is so complex because there are a variety of things at play and he feels that while Aaron’s swallow studies don’t show any overt/obvious aspiration he feels that we are dealing with frequent “micro-aspirations” that are constantly irritating his airway, leaving him primed for the almost monthly severe croup that he experiences. I see all of this as the “chocolate” portion of our swirl from this afternoon…the darker, more challenging reality that we are continually facing, along with the sweet, richness of being seen, understood, and valued by Aaron’s care team.
Now on to the vanilla! There are still quite a few options in the wings that we can try. Dr Johnson and his medical assistant spent a lot of time going over each option with us along with the pros and cons. He does feel that doing a scope would be beneficial, but will likely wait until the fall and pair it with a surgical option that could provide some protection against Aaron’s risk for aspiration as well as mitigating the irritation from all the “tiny” aspirations that are keeping his airway chronically inflamed. This procedure would be temporary, and give us opportunity to see if it improved things and reduced the incidence of severe respiratory issues. If it does there is a second surgery that would be done to permanently enhance this area for long term protection. There are also several medication tweaks and increases that will take place as we head into next fall. There are two other surgeries that were discussed, that are much more invasive and aren’t really being considered at the moment, but shared in order to show us that we have in no way exhausted all of our options for Aaron. I appreciated the thoroughness of the information presented as well as his candor that they have never had a situation like Aaron’s so it is taking a lot of collaboration and creative ideas to figure out how to help him. Also, Aaron’s lungs sounded clear so it seems like the pneumonia has cleared and the elevated temps are more likely Aaron’s body taking care of the micro aspirations that are occurring.
Also, we had Emmalynn along with us and the twins played so beautifully with the sticker and activity books I had brought along. I was amazed at how well they stayed focused on helping and entertaining each other appropriately throughout the hour long appointment. I think everyone needs to have a twin!
I am so grateful to have a team of dedicated and skilled doctors who care deeply about Aaron’s health and well-being. Feeling seen and understood is both validating and healing. Tonight am deeply reassured that our son is in good hands and while his situation remains complicated and sobering, there are lots of tools yet to be used. God is faithfully walking with us, protecting Aaron and guiding our decisions.
Please pray for:
1. Praise for great communication and care plan from our doctor visit today.
2. Praise that it seems like the pneumonia has cleared
3. Continued wisdom for the ongoing decisions that we will be making over the next few months going into the fall
4. Protection for Aaron’s left ear as that tube is no longer functional.
