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. 

Helipad

The floor I work on has recently moved to the new tower and we now have a view. Where we used to look out over a dingy rooftop to brick walls we now look out over Columbia. It really is quite beautiful, you can even see Stephen's Lake Park. However, as you wait for the elevator you get a very clear view of the helipad. For most people this is interesting but, for me, it is breath taking (and not in the positive sense). 

I have been on the floor several times since we moved, but because it is so new I often forget that this can be seen so clearly.  And every time I hit the button and stand back to look out the window while I wait for the elevator it takes my breath away. 

If I'm being transparent, I really try not to think about Sutton's birth. It was extremely traumatic for me - not the birth itself, that was ideal - but the minutes, hours, days, weeks and months that followed are still very difficult for me to process emotionally. So, everytime I see this:

I think how they pushed my intubated, hours old infant down that ramp to the waiting helicopter while we desperately waited for me to be discharged from the hospital. We had no idea what was wrong. We just knew he was in respiratory distress, they had to intubate him and that the scans showed a large mass that had not been seen on any ultrasounds (my last of which was at 28 weeks because of other complications during my pregnancy). Even thinking about it while writing this I feel the fear that I felt that morning and over the next several weeks as we uncovered what his condition was and what the best plan of care would be for him. 

And everytime I am on the floor and see that helipad I have the same momentary, traumatic flashback. It makes going there even harder. 

I hope, one day, I can look back to his birth with feelings of hopefulness and joy just like I remember Cohen's. I'm just not there yet. 

 

Cohen goes to the dentist