Gavin had his third operation five days before turning three months old. Once Gavin was diagnosed with Hirschbrung's disease, it was decided that he would need a two part operation. The first operation was a colostomy, which will help him be able to pass food and stool properly. The second part, which may be as long as a year away, will involve closing up the colostomy and removing the part of Gavin's colon that no longer works. The surgeon could not tell us how long the procedure would be, because the team had to biopsy areas of Gavin's colon, and possibly all the way through his large and small intestines, to find out how much of his digestive tract was affected by Hirschbrung's. Each biopsy would then go to the pathology lab and results were sent back to the OR to determine if the surgeon needed to keep doing biopsies further up. He would have to repeat the process until he found live tissue.
Luckily, Gavin only seems to be affected in the lower part of his colon, so the surgery was about an hour and a half long. We were expecting close to four hours, so when I saw the surgeon walk into the waiting room my whole world froze. As far as I knew, he wasn't supposed to be out yet and any OR updates, including when the procedure was finished, would be transmitted to us through a phone in the OR. So I sat frozen in my waiting room chair and completely shut down in panic.
Due to the fact that we didn't get any help from Chris's unit in getting him home, we lost about 72 hours trying to arrange his trip. The surgeon was doing what he could to hold Gavin's operation until Chris landed Monday morning, but his connecting flight from DC was cancelled. So once he found his luggage, and rented a car, he had to drive the rest of the way to the hospital after spending all night on an international flight. And Gavin couldn't wait that long to get into the OR.
So while Chris was working on getting to us, Gavin had gone in and come out of surgery. The surgeon had come out to the waiting room, because his role in the operating room was complete. He found live cells very soon in the OR, which cut down significantly on the amount of time Gavin had to spend open on the OR table and under anesthesia. There was a potential for the Hirschbrung's to go all the way up to Gavin's small bowel, but PRAISE GOD it was only the end of his colon that was affected. The surgeon let me know that Gavin would be going to the ICU because he was having some trouble coming off of the ventilator, but I had expected that going in as he has had trouble with that after his last two operations.
After the surgeon finished telling me what he found, he asked if I was ok because I wasn't really reacting. I had spent the night before Gavin's operation in the hospital holding him all night, and his nurse had asked me the same question. She asked if I was ok, because I seemed to be stoic. And I realized that's how I've been coping. I can't break down. I'm the only parent here, so I have to stay calm, focus on what the doctors and nurses tell me, make sure I ask the questions I need to, because I have to understand everything going on with Gavin as I am the one constant through all of his medical care. There are certainly times that I do break down, and I can't stop. But most of the time, the only choice is to hold it together because that's what Gavin needs. He needs me to be his biggest advocate, and I can't do that if I'm falling apart instead of listening and learning.
But God certainly knows my weaknesses. I am not a blood and guts kind of person. So the first time Chris and I were taught how to change Gavin's ostomy is a large blur to me. When the PA took off his bag and I saw exactly what was done to Gavin in the OR, I just zoned out as the tears started silently falling down my face. To see your child with an artificial opening and to know that he will have it for at least a year is so heartbreaking. It was one of the few times I have asked why my beautiful, innocent sweet angel of a son has to go through all of this. If I could take on every ounce of pain he has had to endure, and multiply it by one hundred, I would take it on every single day of my life. Luckily, Chris was there and he was able to take it all in when I couldn't. The next three bag changes we did at home, and he patiently walked me through the steps again and again. Today, I tried it by myself with him watching and I think I'm finally getting the hang of it, although my heart still breaks every time I do it.
We have been blessed with amazing souls around us. Between our time at Duke and CHKD, I have developed such an admiration for nurses. We have had so many that have been beacons of light during the darkest days. And the three surgeons who have operated on Gavin, have all done so with great skill. The social workers and chaplains at both hospitals seem to be sent at the exact moments they are needed the most. The times I would never ask someone to come, and somehow they are sent. Every nurse, doctor and surgeon who has laid hands on my son, has contributed significantly to him being with us today. I am eternally grateful to all of them.
Please continue to keep Gavin in your prayers. He goes in Wednesday to have a stent placed in the pulmonary artery that carries blood from his heart to his left lung. It is only 50% the size it should be, and the blood flow directly affects how the lungs develop. It will only be nine days out from his last operation, but this is another procedure that must be done. Chris will still be here for the stent procedure, but will have to leave two days later.
Gavin was able to come home from the hospital on Friday. It was unexpected since we were told that he would stay until his stent procedure. But for the first time since Gavin was born, our entire family was under one roof. It has been the best three days I have had in a long time. I never cease to be amazed at Gavin's strength, and I pray that he will keep that strength and fighting spirit through his procedure on Wednesday. He is my eight pound warrior and I am inspired by him every single day. He is a living and breathing form of eternal hope.