Friday, October 4, 2013

Week #29

As many of you already know, we had quite the little scare with Brayden on Monday and he is fine, but I would like to write this blog to "archive" the event.
Brayden had spent he last weekend with my parents and they said he hadn't been himself, and had some bumps showing up sporadically. I brushed it off assuming his eczema was acting up, but when I saw him on Sunday evening it was clear we had way bigger problems. He had bumps almost everywhere, and I called the oncall person with Hematology/Oncology. They reassured me it was probably nothing and suggested we follow up with Brayden's pediatrician in the morning. When I got up for work on Monday the rash was a LOT worse, but I decided that Bret could handle getting Brayden to the doctor, I needed to work, and I could sneak down for the appointment if I had time. Brayden arrived at KU around nine and I went down to see the doctor. Dr D diagnosed it as hand foot and mouth disease and sent the boys back home. I was relieved it wasn't something more serious and headed back to the unit. Unfortunately when Bret got home there was a message on the machine that Brayden needed to be seen by oncology immediately, so he called the clinic and they made him an appointment for 1230. I did my very best to stay focused on work as all of this was happening, and got a text at one saying Brayden had the chicken pox. WHAT? In my mind I was trying to figure out how he was exposed to the chicken pox, while staying focused on work. Somewhere around two Bret called the unit to let me know they were admitting Brayden to CMH and that they thought it could be chicken pox, or hand foot and mouth, or something else entirely, but at that time they just didn't know. He was doing his best to not sound alarmed, but he clearly was. I also learned that Brayden would not be going to the oncology floor because it wouldn't be safe for the other children. With that I simply could not stay focused any longer and took FMLA for the last 4 hours of my shift.
I arrived at CMH shortly after three and I could not believe how much worse Brayden looked compared to 6 hours prior when I saw him in clinic. He was in negative air isolation and he wasn't crazy about it. I think the gowns and masks really freak him out. I made it in time to see the attending from oncology who suggested Brayden may have the chicken pox but the labs would tell us in a day or two. We also met the attending from infectious disease who also suggested it was the chicken pox. He also suggested if it was we could count on being inpatient for a week or more because Brayden would need to be watched VERY closely for encephalitis (he could deteriorate rapidly) and he would also need IV Acyclovir for that long. The dermatology team came by and they suggested that the rash didn't look like chicken pox or hand foot and mouth. They said they just weren't sure what it could be. They then scraped an area on his arm, and took photos of the worst looking areas. By the end of all these consults I could tell why my husband sounded so alarmed on the phone.....

They started using vinegar soaks on Brayden and covered the lesions with Vaseline. He was not a fan of that and cried hysterically during the whole thing, but he let them do it. He got his first dose of Acyclovir and we ordered him some dinner. He ate good and drank pretty well considering, but he refused to sleep in his crib. Him and Bret spent the majority of the night in the recliner, and I think they managed to get a few hours sleep.

The next day was pretty long. Every time Brayden got calmed down and to sleep someone came in. The consensus as the day progressed was that the rash was improving so it probably wasn't chicken pox but the labs were not back yet. Finally around 5PM oncology came by to say that his labs were back and it was hand foot and mouth disease. We were told Brayden didn't need IV drugs and that we could go home. I was so relieved! We were given a script for topical Bactrim and we were told to put that on all of his open areas as he was at risk for skin infections. We were also told to come back with ANY changes in Brayden no matter how subtle.

Thankfully Brayden is doing well and he even got a break from his AFO's since the rash was also on his feet. Today the rash looks a LOT better and some of his spots are disappearing altogether. I head back to work tomorrow for 3 days so I am hoping Mr Brayden will behave at least until Tuesday.

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