I'm sorry for the delay getting this news out. I've been posting snippets on FB as I can but blogging on my phone is more challenging and I've not had much time to give to it.
Thursday morning Noah was fine. He's lost some weight so I ran out to get him a couple of t-shirts in a smaller size. He was happy about the shirts but started yelping in pain when I was trying them on. He insisted that the area around his central line was hurting so his nurse and I took a good look and it seemed fine.
About 2:30 we did a dressing change and noticed some redness that started at his line site and extended a bit past the top of the dressing. As the afternoon went on, the redness seemed to be continuing to spread and we called our hospice nurse for another set of eyes while we waited to hear back from the pediatrician's office. By about 4:00 the redness was clearly following the tract of his central line and had almost reached his collarbone. The area was hot and swollen.
Hospice got through to Dr. B who said he could swing by that evening or that we could come by his office and just slip in the backdoor to avoid germs. We were all pretty concerned so we headed to the office despite pouring rain.
In the few minutes it took us to get there the redness had spread measurably. Dr B called the line surgeon in Columbia then tried to arrange for an ambulance. When he found out the ambulance would have to to come all the way from Columbia we all decided it would be much faster if we drove him ourselves.
Shortly after we got Noah to his room he started running a fever. The cellulitus had spread to his bloodstream and the bacteria was identified as MRSA. So far repeat cultures are continuing to grow MRSA which means that as of yet they haven't cleared the bloodstream infection. We're still waiting on the most recent set of cultures drawn less than 24 hours ago.
The cellulitus infection which sent us here in the first place has resolved almost completely but the bloodstream infection is of great concern. Noah's labs are stable which is a huge blessing. Other than a blood transfusion late last night, it's just been a matter of trying to hit this infection with very strong drugs and keep repeating cultures.
We don't know yet If Noah will be able to keep his central line or if it will need to be replaced. Pulling the line would be an obvious choice if it weren't getting so difficult to place new ones.
Noah is remarkably stable, probably greatly because we caught this so incredibly fast. We don't usually catch infections before he runs a fever and we hadn't all been so worried about the cellulitus, we'd probably have woken up to a critically ill boy Friday morning instead of catching this Thursday.
Noah feels yucky and is mostly just keeping his head in his pillow watching videos. His service dog Jake is up here as is our oldest daughter Hannah. It's a blessing to have an extra set of hands as well as some company.
I will try to update as we learn more. We covet your prayers.
Blessings,
Kate
