Sweaty Problems

With the hot humid weather last week we encountered some issues with Dylan's Hickman Line dressing. Whilst we were away everything was fine but upon returning home, having to sleep in a room without air conditioning caused him to get very sweaty indeed!

The antibiotic 'Biopatch' disc expands when wet, from sweating for example, and then sits against the skin causing irritation. Tuesday morning last week the skin around and under the disc was pretty much red raw and causing him real discomfort. I quickly changed the dressing but by Wednesday morning it was still extremely sore and looked to be getting worse. I started having to change it twice daily and that was a LOT of Biopatch discs when we usually only get given 5/6 every three weeks so I desperately need to stock up for the summer months ahead.

Thankfully by Friday there was improvement and due to the cooler weather the dressing didn't swell up from sweat so it could be left on a little longer to allow the skin to heal. The problem being that no air can really circulate around it and every time we had to take the dressing off it pulled on it more and the antibiotic wipe would sting. Thankfully as of yesterday evening it seems to be almost fully healed now, but I haven't needed to change his dressing this evening so I will look at it properly underneath tomorrow.

I know not all patients with a Hickman Line use a Biopatch dressing constantly but we have been told we must do so to help prevent infection, I think partly down to how catastrophic what started out as a minor infection, was to Dylan last year. It was a bit of a catch 22 situation at one point though as the damp dressing and needing to keep replacing it were making the skin sore, but had we not used one the skin could then have become infected and spread to his line. We felt a bit stuck between a rock and a hard place for a few days.

Aside from that hiccup we are doing fairly well at the moment. It is chemo week again this week so we are hopeful the powdered Hydrocortisone will work properly again and we won't have a stress response or a temperature spike. I have wondered if the 'effectiveness' of it is wearing off the reason we spiked a temp last time. Is it possible for the body to get use to it? I may ask that question at the hospital tomorrow when we go to pick up his Chemo and meds for the week.

After a relaxing week at Disneyland and a fairly calm week (despite dressing issues) last week, I am now back to feeling more anxious this week. Mike is back on lates and I am alone with my thoughts and Facebook, which is filled with stories of children fighting Cancer and other illnesses. Seeing all the bad news and sad stories of children loosing their battles makes me feel so down, not only from worrying about Dylan's future, but also from feeling their pain and remembering how I felt last March-April. I cannot comprehend what they are going through on one hand but on another I can almost feel it in my heart and it aches for them in a way you can't understand if you've never faced your child's death head on as we have.

We were lucky that each time we were on that knife edge (four particular times spring to mind) he was pulled back from the brink with seconds to spare. But in my mind, and out loud, I had said goodbye to my child each time and imagined a future without him. Actually having to live that future (without any of them) is a different matter though and it is my biggest fear in this life. I wish nobody had to face that fear ever.. it is too cruel for words.

I worry about the future, I worry about the present, and I have flashbacks of the past. It is exhausting fighting a battle with your mind every day whilst trying to be supportive to your children. We have a busy few weeks then a bit of a lull with no major plans to keep us busy as school ends, so we will be on countdown until Dylan's next scan date (which we don't know ourselves yet so we can't tell you). I like to be busy, it keeps me from getting consumed by anxiety so any suggestions are always welcome! :)