Saturday at 5pm, we hit the 72 hour mark of no growth on the blood cultures that were taken at the hospital. At that point, they considered the original positive to be just a contaminant and they were ready to send us home.
The problem was the skin around the PICC site. You see, the TPN (fluid he is fed in his veins) had been slowly leaking and caused a chemical burn on his skin. The area was about 3.5X4.5 inches. And skin that is that raw and inflamed can easily become infected or get cellulitis. If that happens, that is BAD NEWS since it is right at the opening in his arm that leads directly to his heart.
Signs of infection are redness, swelling, tenderness, warmth, oozing ... uh ... he had them ALL. So I was quite concerned. On a regular kid, they would have yanked that PICC line and given him another one. But they didn't because they're trying to save veins. THIS is what told me the extent to which they're willing to go to save a vein. And that spoke volumes.
Now the next problem became the adhesive. They don't want a huge area of adhesive (so that the skin can heal while not under the dressing). And adhesive doesn't stick too well when it's wet. Well, Manny's arm is weeping and draining from the sores so it's constantly wet. They had to change the dressing Friday night, Saturday morning and Saturday afternoon. Then Saturday night they just reinforced it. (Usually it's changed once a week.)
We got home late Saturday night and it was already needing more reinforcement.
Sunday we went to the park and had a wonderful time! It was so great to be outside again. The weather was perfect and we could just live out side. (I keep long sleeves on him right now to minimize anything possibly getting in the dressing.)
Monday morning, it was clear that the dressing needed to be changed ASAP as it was now pulled back and the PICC site was no longer sterile ... that means germs can get in and we run the risk of infection. Nurse drew labs and changed the site. She was horrified by how it looked, afterall, she'd been there just last Monday to do the dressing and it was perfect. It was quite shocking how bad it got so quickly.
This morning, I woke up and looked over at him and was just in awe of this little guy. He was just sleeping so peacefully that I had to snap a picture.
Of course it woke him up and the next picture is his immediate reaction. THIS is how he wakes up every morning. Bright eyes.
Tuesday morning, it was pulled quite a bit off again and I reinforced it. Went to Manny's pediatrician and she thought he looked great (except the arm of course). We talked about when to call "Uncle" on the arm.
By 4pm, the dressing needed even MORE reinforcement and I knew this was't good. At 6pm, I took off his shirt to change him into PJs and the whole bandage had rolled up! The sutures were coming off, there was basically nothing covering the PICC site and I could just feel the germs getting in. (Not really.) I called the home health on call nurse and told her what was going on. She came over immediately and changed the dressing for us. Problem is - we had to use a HUGE dressing just to see if we can get the dressing to last more than a day. But that means the arm will have a hard time healing.
Also today, Manny started retching horribly. He used to do that all the time. But since he's been on TPN, he stopped completely. It was a miracle! The only time he's retched since October was during December when he was on mega doses of antibiotics and antifungals. Even then, he only did it a few times and it was relatively mild.
But this is different. This is like he's sick and dry heaving. I've not seen this type of retching with him before. Very concerning though because he does this quietly. You can't hear him at all, he just stops breathing. Then he aspirates and then there is that whole chicken/egg thing. It's scary to watch him try to breathe.
After it's over he says, "I OK. I was choking."
And the last concern for the night? He's got a fever 99.3 ... At 100.4 I have to go to the hospital and be admitted. Period. End of story.
Normally, we can wait up to maybe 12-24 hours of a fever before we have to go in for blood work, but given he has this huge arm infection, and he already has all the bad signs of possible infection on his arm, we have to go in. I guess I could say that we're ALREADY in the gray area, if he gets a fever, it's no longer gray ... it's black.
So ... as you can see ... we still need tons of prayers.