He started his day bright and early with antibiotics. He’s currently on two… one takes a half hour and the second was one he reacted to yesterday so they’ve slowed the infusion of that to 2 hours instead of 1. So each round of antibiotics takes 2.5 hours to go in, and is repeated every 6 hours. But thankfully his blood cultures have been negative so clearly they are working and the staph infection is under control.
After antibiotics the nurse removed the dressing and de-accesses his port. The adhesive remover is really strong and caused his skin to break out into a raised bumpy rash that was itchy for him. Lots of tears. He climbed into my lap and I rocked him as he just cried and cried. I hated that he had to but I was happy to be a safe space for him.
Thankfully he got to have a much needed relaxing shower and a short break from being covered in stickers and tubes/needles. He walked around the room, hung out in the sunshine in the window, and was in good spirits for a half hour.
Then he had to be re-accessed so he could get more antibiotics. But because of the rash, his skin reacted to the cleansing sticks they used and it stung so badly. So they had to hurry to wash that away, and find a gentler but still affective cleaner (iodine). But by the time they got that all sorted the numbing cream had worn off so he got poked with the 3/4” needle and felt every second of it. It was literal torture for him and the fear and heartbreak in his eyes were beyond hard to see.
He couldn’t eat anything all morning as we were on call for a lumbar puncture. Finally at 2:00 we got called down for his procedure. Thankfully some of his favourite nurses from the oncology clinic were there to be with him throughout the procedure. Although I was there, looking in his eyes and being his anchor while they were prepping him and giving him the anaesthetic, he had a loving grandma figure (with the same name as his Nanny) rubbing his arm, and talking into his ear to be a calm during the chaos of surgery prep. As I sit hours away from my husband and my 12 year old, I pray God keep them happy, safe and healthy while I have no other option but to be here with the little one who makes our family complete.
It is sure to be a long and sleepless night for me as I bear witness to every procedure and infusion Lochlan will get. His little body gets a slight break from 10:45-12:00, and again from 2:30-6:00 tonight. I will sleep then, handing my worries and stresses over to God to hold until a new days starts again and we move forward one step at a time
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