We prepared for surgery which included a special bath with disinfecting wipes, a trip to Radiology for an Xray, and placement of an IV for a lab blood draw and for fluids that would begin at midnight. We spent the night swapping Owen between the two of us, fighting off going to bed to spend every moment with our little warrior in our arms. A little after midnight, Owen was sound asleep and Michelle and I knew we needed to rest for the day ahead. Sleep was hard to come by as we still were waiting in suspense for final word on the surgery. We woke up around 5 and jumped with every opening of our door.
By 6:30 there was still no word, but the nurses were told to continue with another disinfecting wipe down of Owen. In the middle of the bath, we finally got the word, we were a go. Dr. Morales came up around 7:30 to discuss and get our consent for the surgery. He walked us through what his plan was for Owen's operation. There were three phases to Owen's surgery today. The first step involved the pulmonary artery band that was placed in his first surgery. Dr. Morales had to decide whether he was going to remove the band or potentially tighten it. This depended on how Owen's AV valve was performing and how fixable it was.
The AV valve was the second step and the most important step. Owen has what is called a Common AV valve. A normal heart has 2 AV valves, 1 each between the atrium and ventricle. Since Owen's heart formed with basically 1 big ventricle, he had one big AV valve. His valve was leaking and fixing it was part of the first surgery. Dr. Morales was concerned with the valve after the first surgery and he proved to be correct. The first fix did not work very well. Owen's valve was a little underdeveloped and it was going to be a very tricky process to try and fix it. This was his biggest concern and he wasn't quite sure what techniques he would be able to use to fix it until he got in there.
The third step was the Glenn procedure. This basically involved removing a passageway that was going from his head to his heart and rerouting it to passively drain into his lungs. This process works in babies because they are so top heavy and there is more blood flow to the top part of the body. This
is a temporary set up and when Owen gets bigger around 2-3, they will have to perfrom the third stage of his heart surgeries called the Fontan which is a permanent circulation pattern.
Dr. Morlaes left and we were told to be ready to go by 8:30. Owen, being the little warrior he is, was awake laughing and talking to us. He is an inspiration. Michelle and I were terrified, but we did our best to not cry or let Owen know how scared we were. He let us know to be strong and that he wasn't scared.
Around 8:15, they were ready to take Owen down. This immediately put a lump in my throat. Michelle held Owen,who fell asleep right before, in her arms and got on the stretcher to be taken down to the OR. We received many positive comments and encouraging comments from the nurses and people that we have grown to know. Even though we have done this once before and we know it is necessary, it does not get easier to walk your child down for open heart surgery. There were so many thoughts and emotions running through our heads. We were wheeled into the staging area where they processed him and we met with some more doctors before they told us it was time to go. We walked with Owen in our arms up to the OR door where they told us to give our last kisses and loving. The tears poured as we kissed our little warrior and told him how much we loved him. He opened his eyes as we handed him off, almost as if to give us one last sign that he would be brave and see us soon.
We made our way up to the waiting room leaning on each other for strength. It was an emotional time and we kind of let out some built up tears from the last 3 months. We were fortunate enough to be given the same large private waiting room we had for the first surgery because the surgery was going to take a long time. Our gratious and supportive family showed up to be there with us through out the day. We can't thank them enough for everything they have done for us and Owen and given us additional strength to get through this.
Our first update came around 11:30. Owen did great with the anesthesia and they had started to make the incision around 10:30. Dr. Morales was going to take a look at the band first and get an idea of what he was going to do.
We received our next updated around 1:15 and were told that Owen had been put on the heart and lung bypass machine without any problem. They were going to take a look at his pulmonary arteries and veins to see if the size was appropriate and they would also start to assess the valve.
By 2:45 we got another update that Dr. Morales had decided to put Owen on Circulatory arrest for his valve repair. This was different than the heart and bypass machine, because it completely drained Owen's heart of blood and stopped all of his circulation. They cool him down to 21 degrees celcius to preserve his organs and it gives them a clear view of what they are working with. This was the most intense part of a stress filled day. The process is terrifying to think about and truly makes you appreciate what these surgeons are able to do.
Our next update came around 4 when we were told that they were finished with the valve and had moved on to the Glenn. We were told that the initial indication was that the valve repair went well. They would not know for sure how the valve was working until they took him off the heart and lung bypass machine and performed an echo to see it in actions. This also drove their decision to remove the band completely from his pulmonary artery. The Glenn was the "easy" part of the operation and would be the final part.
We got another update around 4:30 that Owen had been taken off of the bypass machine, but the oxygen saturation levels in his blood were in the 60s and 50s. This was obviously not wanted they wanted to see or what we wanted hear. The Glenn was supposed to get us over the hump of the saturation issues. The doctors were obviously not satisfied and put Owen back on the heart lung bypass to try and figure out what was going on. They gave Owen some Nitrous Oxide to help with his lungs and they were going to look and see if his pulmonary arteries needed to be made bigger or if there were any other fixes that they could do to get his sats up.
Our final update was that Dr. Morales decided to expand the pulmonary arteries using a patch. The way they explained it was that they cut along the arteries and place this patch to make it bigger. The patch is eventualy replaced by natural tissue over time and expands it. This seemed to do the trick and his sats were now in the high 70's. They had begun to finish the procedure.
Dr. Morales came out to talk with us shortly after. He was very pleased with how it went. Most of the discussion revolved around the valve. He explained how he used a technique that he not used before which he was thinking about doing the night before because he was worried he would not be able to fix it. He tightened the valve and basically folded the flaps over so when the valve closed, a flat part of the flap was connecting with a flat part from the other flap. Owen's flaps were a little ragged, so when they came together, there was still space for leakage. This appears to have helped to minimize that. This is still something that will be monitored closely, but Dr. Morales seemed very happy with how it looked and worked and in turn, we were happy.
Thank you everyone for the thoughts, kind words, and prayers. It was an exhausting, emotional day. The outpouring from all of you has been such an amazing, uplifting experience. Around 8:30, We were allowed to go up to our room and see Owen in the CICU. We were very nervous because the first time was such a jarring experience to see him, but he looked so much better than the first surgery.
He will be sedated until tomorrow morning and then the plan is to remove his breathing tube and begin to allow him to wake up. We cannot wait to see his smiling face and get to work on the road to recovery.
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