Our adventures continue. (Like you're surprised.)
So after we got home last Tuesday (June 26) after being discharged, we had an uneventful night.
The next day was a wonderful MDA event. Manny is too young to attend summer camp (must be 6) but we were invited for the day. All 6 kids went and we had a blast.
Manny was quite the hit. (He is everywhere.) And Daisy was too. The kids there liked her for the same reasons WE like her. Many of these kids have not been able to hold a dog before because they're too big ... but she is tiny enough for most of them to hold her. She is patient and kind and willing.
When we got in the van, I noticed Manny itching vigorously at the dressing/bandage for his broviac. Oh no. What did I see? THIS:
Yes, it's a rash. I immediately changed the bandages and cleaned the area thoroughly. What happened? I use certain products. They used 2 different ones. I will sort through which it was later. For now, I just needed it off his skin. (And for the record, these were things he's had in the past and had no troubles. We have just stopped using them. So now we know more allergies.)
This is what it looked like the next morning ... even though he was no longer being exposed to the allergen. (This was all over his chest.)
And by the next day, his skin was seeping. Remember that from before? He lost a PICC line from this issue. This time is different though as we knew immediately what was causing the problem and stopped exposing him to it (versus last time when he was still getting exposed to it). So I had hope that we wouldn't lose this line. Meanwhile, last time, we did the watchful waiting method. This time, I was super aggressive and got ahead of it immediately.
By the next day, this is what his skin looked like. So while not all better, it's still much improved.
As I write this, it's almost a week later and he is ALMOST back to normal skin! Praise God!
So phew! That was close.
Wait, not so fast. Last night (Sunday), he got a fever. How high? High enough that I should have taken him in to the ER for blood tests and cultures. And likely an admission.
But ... I didn't go. Why? hmmm. Besides the obvious of I don't wanna??
Here's my rationale: Last Tuesday he got blood cultures and tests. They were all normal. So the odds of having an infection 5 days later is remote. And if it is an infection, it will be on the mild side since it has only had the 5 days or less to grow. Finally, if it is an infection, his fever will continue and he will stay/be sick. I monitor him all day and night long (even up to every 2 hours overnight). Finally, we had our weekly blood test first thing Monday morning at home. I will know the results of that by Tuesday morning.
So ... I feel safe that we are likely just dealing with another fluke of a fever (like we got in Denver ... oh, wait, I haven't told that story yet.) I've heard that kids with mitochondrial disorders (like Manny is suspected to have) often have unexplained fevers. If that is his new normal ... to have periodic unexplained fevers, I will either have to spend a lot of unnecessary time in the hospital for every fever OR have to learn how to differentiate them.
So now it's Monday afternoon and I'm waiting to see what his fever does. He's hanging right around that "go to the ER" number. Hovering near it. I plan to wait until the blood tests results tomorrow ... unless he takes a turn for the worse earlier of course.
And is that all that is going on? Of course not! Remember back in January where I had to get a bone graft for a tooth? Well, today we were checking to see if it is ready for the implant yet. I thought it was going to be a simple, quick talking only visit. But silly me ... I mentioned a problem.
Remember back in May (when Manny was in the hospital with the flu and needing a blood transfusion), I felt like I lost a filling on my back lower tooth. No biggie I thought. The only problem was that the jagged edges were cutting my tongue. I eventually got used to it and that was that. I figured it would be an easy stick the filling back in at the same time as the implant (scheduled for end of July). So imagine my shock when he said that the filling was actually still there and it was a "sink hole". The whole tooth collapsed in on itself. The nerve was exposed and there was major major decay. He couldn't believe I wasn't screaming in pain. And the infection in it was certainly causing my heart some complications. Great! So I figured today was as good as any day to do it.
Oh, and the only interesting thing was ... he kept having to give more anesthesia as he couldn't find the nerve for that tooth. He stuck me like 20 times and finally just did a block at the whole nerve root way up in my upper lip. I have holes everywhere. And even that didn't work completely and he had to do one right into the tooth itself. And still I could feel it, not just pressure but pain. Yikes! He kept saying I have unusual anatomy! I told him I wasn't surprised that I am "different" ... I am in every area of life, so why not this? LOL
But it certainly explains why the bone graft dry socket was such a problem back in February. The alternate dentist didn't even CHECK to see if I was numb when he went to repair it. He just assumed and went in. I told him it hurt like heck and he didn't believe me. Yowzers! Now I know why that hurt so much!!
So I sit here with vicodin on board and it's barely taking the edge off the pain. (And I'm one who doesn't even do tylenol etc. typically).
Finally, cute Manny story ... All the kids and went to a restaurant and ordered food. Manny ordered a "Chicken Mouse". LOL
I guess to a child that doesn't eat and never has eaten, that food makes as much sense as any other!