Officially outnumbered!

Coming this November!

May follow up

Walking into this months appointment I still had the same feelings of anxiousness and excitement that I had at last months follow up. I half heartedly hoped she would just ask us if we could stay in St. Louis because they had room in their surgery schedules tomorrow. I knew that wouldn't happen, but part of me was hoping it would. At least then I wouldn't  have time to become more fearful and nervous. No such luck.  

Here is what we know:

After reviewing the images from the MRI more thoroughly and taking Sutton's case before their entire practice for consideration on treatment possibilities, they decided surgery should happen in a timely manner. By that I mean that it's not urgent, but it shouldn't be needlessly delayed either. The good news was that the size of the hygroma seems to be the same as when Sutton's last MRI was done at about 2 weeks old. In that original scan, the hygroma was so large that it descended into his chest just below his clavicle. Since he is now more than double that size and the hygroma hasn't increased in size, it's no longer in his chest, but all in his neck. His ENT still isn't confident she can remove all of the affected nodes due to them being intertwined with nerves and vessels, but she is certain she can get more of it than she originally thought. 

Surgery: 

Two physicians have blocked out 8 hours for the procedure. If all goes well it could take less time. If they get in there and find out things are more complex and the hygroma is rooted into areas they weren't able to see on scans then it could be longer. There is a very good chance he will need a blood transfusion during the procedure. He risks damage to facial nerves that could impair his ability to swallow, smile or chew as well as further damage to his vocal cords (which have already been severely stressed due to the pressure in his neck). This could result in a permanently hoarse condition. Many of you can gather the obvious risks if there is damage to a major vessel during surgery. He will remain intubated and likely have drains immediately post-op and there is still a risk for a trach as I've discussed in previous posts. Our hope, naturally, is that the worst case scenario involves a permanently hoarse voice. 

June 16. Eight days before his first birthday. Before this visit, excitement at getting this over with was the overriding emotion. Now it's quickly becoming fear. The reality is, no matter how competent the physicians are, this is a tricky procedure in a small space in a delicate area of the body. The potential for things to go astray are large. What if my baby doesn't come out the same as he went in minus a few lymph nodes? What if he doesn't come out at all? And I will tell you, the last thing I want to hear is that it will be okay, no matter what happens. You can tell me it will all be okay, but those aren't your promises to make. 

As the next 6 weeks or so pass we will try to live like "normal" and I will plan his first birthday. I will try not to let the fear overtake things because he is having surgery regardless of my concerns. Kedric and I have put him in the most capable hands which, really, is about the only thing we have control over. 

Until surgery....