Wednesday, April 16, 2014
Tuesday, April 15, 2014
April MRI and follow up
I apologize for the belated nature of this post, especially considering this was more than our average follow up. I'm pleased to say I only have good news to report!
(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.
(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.
Thursday, March 6, 2014
March follow up
It seems the fluid filled portions of Sutton's hygroma are larger, but are not a serious concern at this time. Sclerotherapy (the procedure where the larger, fluid filled portions of the hygroma are drained and then injected with an antibiotic in an attempt to "seal" them to prevent refilling) was written off as a viable alternative to surgery for a few different reasons. While this was done when he was only 2 days old, when surgery is necessary it is not preferred that sclerotherapy be repeated numerous times prior to surgery because of the scar tissue that develops. It could be an acceptable maintenance option after many of the affected nodes have been resected. Because of the size and location of his hygroma and the fact that his airway, voice box and vocal cords are all displaced as a result of it, surgery is going to be necessary at some point.
Since we are relatively certain of the need for surgery, we discussed the next several months as we carry Sutton on COBRA and there is a limited window for him to be covered under that insurance. We made that decision because his doctors and SLCH are not in network on our present policy and we wanted the continuity of care for him, especially when the time comes for surgery. At this time, we have no data points to give us an idea of when surgery will occur based on how the actual hygroma has changed. He had an MRI done while in the NICU that showed the extent of the affected nodes (the majority of the right side of his neck, under his chin/tongue, and down just below his clavicle) but, as I've mentioned before, the nature of this is very dynamic. In order for his doctor to know if and approximately when surgery will happen and for us to be aware of what goals we are striving for in preparation for that (i.e., weight, time of the year, age) he will need another MRI.
So, that is our next marker. At his April follow up this will be done. This is a bigger deal for an infant than it is for an adult because it will require that he be sedated. Fortunately, as long as all goes well it will be an outpatient procedure. Prayers for his safety during and recovery after the MRI would be greatly appreciated.
(We went and visited Uncle Jon at his new place after our appointment today).
Again very thankfully, until next month.
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