Due to neuromuscular scoliosis (related to his cerebral palsy), Brennen had a severe curve in his spine that had progressed gradually over the past few years, and got significantly worse over the last couple of months. He has been in a tremendous amount of pain and discomfort (as I talked about HERE), to the point where he could no longer tolerate sitting or even lying down, and so we found ourselves at a point where the surgery was our only option. Having his spine fused will stop the progression of the curve and straighten his spine, which also helps to align his hips and pelvis, putting less stress on his internal organs.
Brennen has had surgeries in the past (ie. this one), and while I hesitate to say that it gets easier, it does become familiar. We checked into the Janeway again on Monday, February 6th (the day after his birthday), and geared ourselves up for surgery the following day.
We are fortunate to have developed a great relationship with many of the doctors, nurses and staff who have been looking after our boy for many years now. While this may be routine for them, they recognize that it is not the norm for us and they treated us with the upmost courtesy, respect and understanding. We were worried, but we knew we were in good hands.
The surgery went as well as could be expected. By the hands of highly skilled surgeons, Brennen's spine was fused from T3 to his pelvis. He had instrumentation (2 rods and 42 screws) attached directly to his vertebrae to support his spine. The procedure took six hours, and thankfully there were no complications. His bleeding was controlled, and while they had units of blood ready for him, he did not require a transfusion. Instead, he was able to get some of his own blood back via a "cell saver" (intraoperative cell salvage machine).
When we were able to see Brennen in the PICU, my heart crumbled. Even though I knew that the surgery was successful and he was going to be fine, I just can't come to terms with the fact that his little body has to go through so much because of his disability. I grieve each thing, each opportunity, each experience that has been stolen from him, and I grieve for the fact that I am not able to fulfill the most fundamental maternal instinct - to protect my child from pain and suffering.
After the surgery, Brennen had a fair amount of bleeding, and was given a transfusion of plasma to help with clotting. He remained on a ventilator for breathing support, and he had an NG tube from his nose to his stomach for nutrition. He had IVs in both hands and an arterial line in his foot. He had a butterfly needle in his arm for subcutaneous morphine injections, and was monitored very closely for pain management. He spent a night in the Pediatric Intensive Care Unit before returning to our cozy room on J4 Surgery, where we are currently.
This lucky elephant was given to Brennen by a young boy we met in the hospital this week. While going through a difficult time himself, he showed such empathy and compassion for Brennen, and he really touched my heart. I truly believe that people come into your life for a reason. I was in need of a pick-me-up, and this one came at just the right time. Life can be painful in all sorts of ways, and it made me realize that while I would rather have an easy-breezy life, that is not realistic, nor would it be so rich and full. Thank you, Kaisen, for this special gift. You made a big impact on our whole family, and we will never forget your kindness. You have inspired us, and I hope that even in these challenging times, as we cultivate more love and light, life will be a bit easier for all of us. We hope to see you again!
Brennen had a couple of episodes of 'respiratory distress' shortly after the surgery, where his oxygen levels would drop and they had to call in back-up, but he has been doing relatively well in the days since. His pain is the biggest issue right now, and though he is on some heavy medications, he still has quite a bit of discomfort.
We are taking things day by day. We are seeing some improvements and feel encouraged by Brennen's overall disposition. Andrew and I are taking turns at the hospital so one of us is always with Brennen. The stress level is definitely high, but seeing him start to have increased periods of awake time with slightly less pain is keeping our hearts happy and our spirits up.
Brennen is amazing and he is fighting this with everything he's got. His resilience, determination, and courage are far greater than my own. Once again, he is teaching us what strength truly is and we are so inspired by our brave little boy.
Thank you all for your concern, prayers and love for our boy.
We so appreciate your support and your positive thoughts for all of us.