I presented the info to her this way: Bottom line is ... either the literature is wrong and Merosin DOES affect Smooth Muscles or Manny has a SECOND very rare disease. After a long discussion, we decided the best thing would be to contact the NIH (where we are supposed to go next week) and collaborate with them.
There are some tests she wants done on the actual muscle that was biopsied. It's the best hope of finding the issue. The hope is to get to the bottom of it so Manny can eat again. Plain and simple.
I was very excited about this visit and the outcome.
Thursday night: The kids had a PTA fundraiser at Chuck E. Cheese. Because it's Manny's favorite place, I took them, even though Manny wasn't 100%. His arm is the only problem and we have it thoroughly covered so I figured why not?
Friday: Manny had an appointment with the cardiologist. The doctor was able to hear a new murmur. He thinks it's an "innocent" murmur but wanted to be sure so he strapped a 24 hour holter monitor on him.
While we were on the hospital campus anyway, I decided to look up the IV person, Stephanie. She is the one who helped put this thing in last Friday night. We talked for a while and then called Dr. Cartaya "Doc" to come help decide what to do (since this was HIS idea). I talked with him privately for a bit ... told him my concerns about not being able to keep the site sterile because the skin was still weeping and causing the bandages to peel up. We bounced some ideas.
Stephanie also called the Wound Nurse who had great ideas. After a long discussion, we came up with a plan of action on how to care for the wound. (The one I'd been seeing every day for the past week.) Doc left.
Got into the room. Pulled off the dressing. And I was in SHOCK at what we saw. This was no longer skin being irritated or red or raised bumps. The whole thing was PURPLE and smelled. There was infection. There was DEEP tissue cellulitis. It is BAD. This picture doesn't even begin to do this justice!
|The skin is weeping. The purple is deep, deep cellulitis. There's an on smell on the skin. There's a red rash beyond the borders of the bandages. There is lymph node involvement under the armpit. The arm is more swollen today than day 1|
The nurses were shocked too. Stephanie immediately called Doc to come look at it. He walked in and eyes got big. He basically asked which floor I'd like to be admitted to. This thing HAD to come out NOW!
Now you realize, I'd come for a 2 hour doctor appointment. I had nothing with me. NO cell charger, no laptop, no clothes, nothing. (Not to worry, I had a bag packed still at home ... sadly, I had a feeling that it was wise to keep it packed.)
I text Dan, "Being Admitted". He replied, "Long or short". (I think that conversation says it all... we got to the heart of the matter... no emotional outburst, just business. Sad.)
Stephanie gets an IV in. Draws blood. Takes out the PICC line. Attends to the arm. All this is done and we are not even admitted. We are not in the system at all. This was sooo not the way it was supposed to go. We are very "off script". They can't even send the blood yet because there are no labels, etc for it.
Cartaya goes and writes up the orders. I carry the drawn blood with me. I get registered. We are admitted. Back to the same floor we just left, less than a week ago.
Dan gathers up my stuff and brings us dinner. Kids are all too comfortable with this environment too.
Tonight, he's all comfy in his big bed. No crib was available so they put him in a regular bed. He looks so tiny in it! But there's room for us to snuggle, which is nice too.
Me? I know you're all wondering. I am on pause again. Truthfully, I wouldn't be shocked to hear that he has a blood infection/sepsis. I am not hoping for that, just a gut feeling. And I am praying that my gut is wrong this time. (It rarely is!) So I am praying that God just heal him and heal his blood.
The plan? Wait for the blood cultures NOT to grow again. IF they don't, we will try to put in a Broviac on Monday. If that goes well, we could even go home as early as Monday evening. That is a good plan. I like that plan.
If it does grow something, we're here for the long haul again. We hope and pray that this isn't ahead of us this time. I do not like this plan.
So ... if we get Plan A, I'm good. I'm fine. I'm just a bit numb.
If we get Plan B, I think I will need some kind of psychiatric intervention. (Mostly kidding, I think.)
So for now, I hunker down. We go back to living one day at a time.
If anybody is still reading and along for this VERY bumpy ride, Thanks! We're still in need of all the support we can get. This story needs to be told high and low. Apparently, God wants to get a lot of Bang out of Manny's story and He wants many people to know about His goodness.