Worse Before Better...

Monday I took Sam in for platelets. This is typical as she needs them twice per week to avoid internal bleeding. Luckily uncle Kurt arrived the night before and came with me as my mom took Kaeden to Key Lime Cove for a night for his "spring break" we had talked in January about a family trip to Florida but that will have to be saved for another year down the road...

Over the weekend Sam had started to show more signs of new pain. She has enough with her fissures etc. but this was new. Now she wouldn't stand or walk at all and she would whimper and cry even with small movements. We emailed the doc before coming in for platelets and she scheduled an ultrasound of her abdomen and interventional radiology consult.

We arrived at the hospital at about 815 am. Platelets transfused about 930 am and labs drawn. Sam fell asleep about 145pm finally and of course right at that moment is when they are finally ready for ultrasound. We finished the ultrasound while I lay next to Sam and uncle Kurt distracted her with videos of Kaeden bowling:) IR consult was not as kind. They agreed with transplant doc that g tube site is infected bc of her non existent immune system and to start a new antibiotic for this. They had to remove the "t fasteners" at the site which involved me laying and holding Sam, Kurt holding her hands, a nurse holding her feet, and the doctor pressing and removing skin from the infected site while clipping off the fasteners. It's heartbreaking to hold your toddler down as she screams " mommy all done" over and over but the hardest part for me is the accumulative effect. Each of these procedures or days in isolation is tolerable but these things happen every day. Each time she goes to the bathroom I cringe and hold her as she cries in pain. Each diaper change that follows as she shakes. Every picc line dressing change every week.

Sam's infected g-tube site

Our transplant doc is sensing my decreased stamina and gives me blunt heart to hearts each clinic visit. She describes and warns about transplant "she will get sicker... We have to make it worse before it gets better." Fevers, chills, shakes/ tremors, mouth sores, esophagus sores, bloody mucus, joint / muscle pain, hair loss, kidney/liver dysfunction, catheters, sterility side effects etc etc. She is not trying to scare me. I know only prepare me. I hear her every word but try not to let the picture she is painting form in my mind.  Sam is now finally asleep in my arms again but it's tube to go home. She stirs and vomits everywhere. The kind nurses help me clean it up and the doctor lends me scrubs for the ride home.

We head home for hopefully two days before returning to start chemo. I need to hug Kaeden one more time at least before I will rarely see him for months. If Sam's g tube site looks worse, a fever, or pain is uncontrolled by the morphine, we check in sooner but as of now, Thursday morning it begins. Kurt refocuses me in the car... Worse before it gets better, yes.... But at least that hopefully ends with better!