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!!

WC Day 5: Slow Cooked Beef Fajitas

As promised, some of our Pinterest favorites......

Slow Cooked Beef Fajitas

http://www.bigoven.com/recipe/403377/slow-cooked-beef-fajitas

*****

Split between 2 bags, seal, mix, lay flat, freeze

Each bag serves 4-6

3 lb beef round steak cut into strips (across the grain)

2 8 oz cans diced tomatoes w/ chiles

1 large onion or 2 small

1 green pepper, cut into strips

1 red pepper, cut into strips

2 tsp cilantro, 2 cloves garlic, minced, 2 tsp chili powder , 2 tsp cumin, salt and pepper to taste

1 jalapeno chopped (optional, obviously not a good toddler choice)

Directions for Bags:

Cook on low 5-6 hours. Scoop with slotted spoon onto corn (or flour) tortillas. Garnish with sour cream, avocado, shredded cheese, pico de galo, etc

This has 5 stars with this family.....highest it can get!! It's SUPER easy, makes two meals at the same time, and tastes amazing!!!

PS.....We see the surgeon with Madi this afternoon and I will update when we get home.
PSS.....Prayers needed today are for clarity and wisdom with the surgeon, and that we can devise a plan; that we get results from the culture and sensitivities before the end of the day so we can start her on the right antibiotic, and don't end up with her uncovered all weekend; and that bloodwork comes back and doesn't show a systemic infection. Thanks friends!!

WC Day 4: “Accomplished!!” & A Madi Update

 A few weeks back, Madison and I were talking.  Actually, I was sitting on the couch looking at my phone and sighed out loud.  When Madi asked me what was wrong, I shared that I wanted to just sit for a few minutes and veg, but was feeling guilty because I had so much I needed to do.

As we talked, I started ticking off all that I had gotten done that day and the day before. I had made some calls, gotten some laundry done, and as I continued Madison started pumping her fist in the air as she yelled “ACCOMPLISHED!!” after each one I said. By the end of my list, I was doing the fist pump too, and actually feeling a little better about taking the break!!

Granted, we then took it to the silly…..I ate breakfast – ACCOMPLISHED!! I took a shower – ACCOMPLISHED!! Etc and so on. If only it was as silly as it sounds….some days I really do feel like it’s a major accomplishment when I manage to get some of these things done!!

What I came away with though, beyond the realization that sometimes even the small things are big accomplishments, is that I really do feel better, even if I am only just thinking “ACCOMPLISHED!!” in my head. Sometimes I am getting more done than I even realize…..and sometimes I am not, but need to keep cheering myself on.

It really is awesome…..you should try it!!

Thanks for the prayers for today’s appointment for Madison.  We saw our wonderful GI doctor this afternoon and have a plan of sorts.

He got to see the much improved abscess, that is honestly still pretty gnarly. His feeling is that we have multiple “tracts” that are likely connecting with the g-tube tract and it’s a mess. He’s again concerned we may lose this g-tube site altogether. However, as I shared with him, on our last visit with surgery we were told they almost never lose sites and can do a lot to maintain what we have. We shall see. He took some pictures, and I shared the ones I had taken a few days ago, and he was off to talk with our favorite surgeon to see if we could get her in soon.

We also discussed continuing antibiotic coverage since she is still clearly infected even after a 7 day course of Keflex. Since we got the culture yesterday, we are going to wait for it to grow and get sensitivities before starting our next round….hopefully tomorrow. Hate that we are running into a weekend with this!! Prayers that we get the information needed by tomorrow and can get her back on something ASAP is appreciated.

Finally, he ordered some labs to see if there was any sign that the infection has become systemic at all. I won’t be surprised one way or the other…..in a child that just doesn’t run fevers anymore, it’s super hard to know. We should have those results by Monday and see where we go from there.

Dr. O jumped right on things, and by the time we made it home I had a message to contact surgery to get her an appointment. I wasn’t sure how long it might take, so was pleasantly surprised when they said Dr. M can see her tomorrow afternoon!!

Ultimately, it appears that surgery will definitely happen, question is whether it will be a total closure of this g-tube site and creating a new one, or somehow getting the area around this one cleared up. Knowing our surgeon, Dr. M, I suspect we will have a plan tomorrow before we leave his office.

Not feeling it totally, but I am going to say it anyway since it might make me feel better about it all…….

ACCOMPLISHED!!

(with a less than enthusiastic fist pump)

Stay tuned for the next installment in the g-tube saga……..