Doctors told us MRI results showed a pocket of fluid around catheter. The next day there was a catheter dye study which showed that the catheter going into the spine hadn’t moved and the Baclofen was getting to where it needed to go. Then there was an appointment to extract the fluid. When the seroma filled up again, he had yet another procedure to put a drain put in. Unfortunately, the lab results of the fluid showed the presence of Cerebral Spinal Fluid which means that there is spinal fluid leaking through the catheter entrance point into his spine. They wrapped an abdominal binder around his torso to apply pressure to the site in hopes to promote the leak to close up on its own. In the meantime, we have to keep a close eye on his behavior and/or any pain or nausea as it might be an indicator that the leak is becoming harmful. There are other steps they can take to stop the leak but we hope they don’t have to go to those measures.
Hannah came in late Thursday night and here is what she shared of her time with us:
Friday- I flew in late last night so I surprised Seth in his room. He was thrilled! Mom and Seth went to the foot doctor in the morning where the staples were removed and he was casted for AFOs (Ankle & Foot Orthotics). One more week and they can do more weight bearing therapies, as tolerated. For lunch, Craig had food truck Friday! We said, “We’ll take one of everything!” The bummer of Friday was that the aquarium outing was cancelled for the second time at the very last minute due to the stat drain needing to be put in (it was cancelled the first time on his birthday due to some other health issues).
Saturday – This morning, we went to the T-rec room and made cinnamon rolls in the shape of an S (for Sethy, of course!) and made smoothies (Seth picked strawberry, banana & orange). Later, we painted on fabric where Seth drew shapes (heart, circle, smiley face) and painted his name (and drew masterpiece portraits of me and Ben) with a modified glove paintbrush. I also brought a skein of yarn to crochet a beanie for Seth (he picked the color). With half a skein left, I made matching hats for all of his stuffed animals which he and everyone got a laugh out of. It was also my first time spending the night in the room with Seth. I hadn’t been able to up until this point because I always had Annabelle with me (that’s right, she had a weekend with Dad this time! I missed her so much!) We both slept through the night fairly well and I can put it in writing that Seth says I don’t snore!
Sunday 8/22 – A day of rest. We watched church and gave Seth communion. We looked through the photo album made with love by friends and family. I left in the afternoon and will miss Seth so much!!
Please pray specifically for the CSF leak to heal on its own. For increased appetite and less fatigue. Thank you, God, for another day of healing!
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