Dr. Bulter, our pediatric neurosurgeon, recommended surgery 1) to remove the tube of skin that lead from his back to his spinal dura to decrease the risk of bacteria entering from the outside and traveling into the spinal fluid, causing spinal meningitis and 2) to check to see if the skin connection extended to the spinal cord, and if so, to remove the skin (un-tether the cord).
We were allowed to stay with Preston when they took him into the Operating room, and were by his side when they gave him gas that put him to sleep. Because the surgical ward is sterile, we had to make sure we were completely covered. I felt like I was on the TV show ER!
We left Preston at 8am, and we were told the surgery could take up to 6 hours. Mom, Dad, Lesley, Dug and Mazzy were there to spend the day with us, which was wonderful. The sun was shining and the trees were blooming; it was a perfect day for a long walk along the Charles River.
Around 1pm, Preston was out of surgery and transferred to the PICU (pediatric intensive care unit). We met with the surgeon who told us that the procedure went very smoothly and that he did find that the cord of skin was attached to the spinal cord, and he was able to remove it without any complications. Preston was very groggy when we first saw him, and his face and eyes were swollen from being on his back for so many hours during the surgery. He also had contracted croup (which is basically just a cough that sounds like a barking seal) due to his throat constricting upon removal of the breathing tube. A few treatments of an epinenphrin gas made him sound much better!
The nurses in the PICU were wonderful and very attentive. They made sure Preston was comfortable at all times. The first night in the hospital was very easy- he slept through most of it and we had our own room so I was able to sleep on a cot that was brought in. Alex was able to sleep in one of the "parent rooms" that contained a bed, chair and tv. MGH is a really great hospital and the nurses and doctors went out of their way to make sure the parents are as well taken care of as the patients.
Preston had to remain on his back for twenty-four hours after the surgery, so at 1pm the following day, he was able to sit up. He seemed less groggy, but still puffy and a bit uncomfortable. We were moved from the PICU to the regular pediatric floor, where we had to share a room. That wasn't so nice, but at least we had the window-side of the room! Check out our view!
Here are some photos of day two:
On the second night, Mom, Dad, Bobby and Jen came to visit and Preston was just starting to seem like his normal self. Alex and I were able to both sleep in the room with him overnight and by Wednesday morning, Preston was well enough to be able to return home!
Preston has been recovering really well. The first few days back home, he was very sleepy and a bit fussy. It's been a week now, and today was the first day thay he needed absolutely no pain medication. He is back to his happy and silly self and his appetite has returned (although we were not really concerned about that one!). On Saturday, six days after the surgery, we were able to remove his bandage. His wound consists of dissolve-able stitches covered by a glue that will keep the wound together while it heals, at the same time keeping out bacteria. This photo was taken immediately after we removed the bandage.
Thank you for all of your prayers, support and messages while we were going through this. We are so grateful that everything went well and we can finally put this behind us! xoxo