Madi Update

Madi meeting R5

We saw the surgeon, Dr. M, this afternoon and I was reminded how much I like him.  He did Abby & Chance’s Nissen Fundoplications and g-tube placements back in 2009, and it is clear why he is so respected by the other doctors at Cooks, and the parents I know who use him. He’s gentle with the kids, very kind, and explains things well. And he takes the bull by the horns and makes plans, even if they are not ideal. But then, when is it ever ideal to be discussing surgery on your child, right?

Dr. M took a look at things, shared that he had seen the pictures we shared with our GI, Dr. O, and had a pretty good idea what we are dealing with.  It’s something he has seen and worked on a couple of other times, which with as many surgeries he does, says a lot about how rare this kind of thing is. At least he has seen it, worked on it, and has apparently been successful repairing it. That gives me some peace.

So, his feeling is that Madison has developed fistula’s coming from somewhere internally to the skin around her g-tube site. Best case scenario, these fistulas are shallow (not going deeply), maybe going from the g-tube tract to the external skin, but it’s impossible to know till he gets in there. At the moment, he was able to clearly see 4 of them, but there could be more down inside the g-tube tract that we cannot see.

I am hoping I can explain the plan without being too graphic…..forgive me ahead of time if I fail, or if your not good about these kinds of things, perhaps jump past this next paragraph!!

Closing fistulas can be a real challenge, and there is really only one remedy for them, and that is to get them to heal from the inside out. What this means for our girl is that, while under anesthesia, they will thread wires into the fistulas to figure out where they go. Once they have the path figured out, they will cut down to the wire, wherever it may be, clean the infection out, and then leave these incisions open to heal from the inside out, however long that takes. Today’s count was four, so at this moment we are preparing for 4 open incisions that we have to try and keep healthy and get healed. They will change her feeding tube (a button type) out for a PEG (long tube) so we can avoid messing with the area of the incisions as much as possible, and hopefully keep the area cleaner.

Madison is handling it all like the rock star she is.

I, on the other hand, am feeling a little stressed about how we keep the staph monster away, and whether her connective tissue issues will impede the healing we need to take place, as quickly as possible. I have no doubt this is what needs to be done, but I would be lying if I said I wasn’t dreading it. Madi and I are both relieved to hear that he feels like he can save her g-tube site, and that while Madison presents him with some unique challenges, this remedy has worked in the past.

We will hear from Dr. M’s scheduler Monday, but he said this is not a long surgery, so it shouldn’t take long to get us on his schedule. I am actually hoping we get it done next week, but it could be the following one. We will be inpatient for at least one night, but we will dictate our stay on how Madison is doing overall.

In other news, the culture is still not really growing anything, so we are NOT on a new antibiotic. I am keeping the faith that this will not backfire, but we will watch her closely through the weekend, and perhaps, if something is going to grow, we will have more information on Monday. I didn’t hear anything on the lab work, so I am assuming all looked okay, but will get more definitive information next week.

Madi is maybe a little punier than usual, but since the pain eased as the abscess drained, she has looked so much better. We are headed out early tomorrow morning for the Walk for Wishes and are looking forward to seeing our MAW family!!

Thank you all for the continued prayers!!