(1) The MRI went extremely well. We had discussions with the staff at SLCH prior to the appointment about whether Sutton would need to be intubated during the test. When an infant has an MRI done they are put under general anesthesia (just like surgery). This makes them very relaxed and can cause airway issues. Since Sutton has a questionable airway there was lingering concern over whether he would need to be intubated. And then, of course, concern on our end over whether he could be extubated. We are a bit traumatized over his experiences in the NICU with failed extubation. Of course, he has been successfully extubated, but the image of my screaming, purple baby and the physician asking me to leave so he could be reintubated is an unfortunate memory burned in my brain. The staff decided to forgo intubation and just see how he did. They were prepared to intubate if necessary, but he ended up just needing a little oxygen support. Yay!
His ENT said this is promising for surgery. We have concerns there as well because he will have to be intubated to remove the hygroma and if they cannot get him extubated due to weakening of the cartilage in his airway over the last year from the pressure of the hygroma he still may need a trach. BUT, it's promising. We're holding on to that!
(2) His ENT only got to look over the images briefly before our appointment with her, but she felt that the images obtained at this MRI were not much different than the images obtained when he was a week or so old. This is GREAT! There are two very sizable nodes, one fluid filled and one solid, that seem to be the most problematic. At quick glance she thinks she can get both of them out, but she wants to study the images and determine where the vessels and nerves fall exactly so she can plan specifically what she can remove before he is on the table. She also wants to review the images with her colleagues, one of whom has been following Sutton since birth and was going to perform the procedure with her when we were anticipating surgery in the NICU.
(3) Surgery will likely be early to mid June. We were hoping for, say, tomorrow (only kidding, but we want to get it over with), but the two physicians are attending a conference at the end of May and want to be around post-op just in case something would go awry. He will be their only case for the day because of the uncertain length of the procedure. They can see a lot from imaging, but they can't see everything. We pray that they aren't surprised by anything when they get into surgery.
He will likely spend one to two weeks in the hospital afterwards with his initial residence in the PICU because he will remain intubated for an indefinite period of time after surgery while the swelling recedes. As long as the swelling goes down and he can be extubated without incident, we will follow up with her a few weeks after discharge from the hospital and then not need a follow up for 6 months to a year. A YEAR. We will very much welcome a transition back to "normalcy" with infrequent doctor visits. We will always have to be cognizant of germs with him, but every passing month brings more hope that he can one day mingle with the masses without a chronic, underlying concern that he could loose his airway.
We are excited for our May follow up because it will start the official planning for surgery. I actually read through a lot of my blog posts from our time in the NICU and I am still baffled that we are here. How did we get out of surgery then? How did we make it through winter when he was hospitalized for a cold in August? Our family is so unbelievably grateful that we made it to the goal of one year for surgery.
Gratefully, until next month.
No comments:
Post a Comment