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.