Post-VEPTR and no folks, that's not plural

It's 9 days post-surgery. And we are home. And that is a wonderful thing. For those of you who want to know what the surgery experience is like, read this. For those who don't, don't read this post. It's not horrible or full of gore, but it's not particularly pleasant either.

This is what our week was like. Monday we arrived in Philly. We had to go to the hospital for a 3D chest CT scan. Basically the terms under which we were there having the CT Scan were: If there is no CT Scan, there is no surgery. And we cannot sedate him because Owen has centralized apnea and therefore must be put under general anesthesia and monitored. And my terms were: no general anesthesia period. He is having surgery in the morning and we aren't putting him under 2 times in 2 days. No. Their return terms: We aren't going to perform the CT Scan if he so much as moves or cries. And my return terms: Oh yes you are. So it was a tense situation. But a little help from benedryl (with permission of course) and Owen took a well-timed nap and we got the CT Scan done. I literally sweated through it, but the relied we felt when it was over was immense.

Monday night, we went to the hotel and played. We went out to dinner. We tried to show Owen a good time.

Tuesday morning at 4:30 am, we wake up and Owen is on to us. He can see that we are anxious and he is anxious too. We get to the hospital for 6am. We are called in at 6:30 and Owen is given some medicine to calm him. They should give the mommies that medicine. Owen was now fine, but we were scared. We met with the docs and the nurses. We went over everything with each one of them. And by 8am, they took Owen away.

We went to get coffee. And we met up with one of the moms I had been talking to whose son had VEPTRS placed the previous Tuesday. That kept us going. Meeting her and her son gave Nick and I such hope. It was one week later and they were both in the cafeteria, he was smiling, gave us a high-five and he was straight. It was amazing. We felt a little better.

Surgery took 7 hours total- 2 of which were positioning and prepping. At some point they came out and told us that due to O's extra tissue (facia- which is comparable to scar tissue) it was a very difficult surgery and they were only able to the complete the left side. He was under for along time at that point and to start working on the right which would have taken about as long would have been too dangerous. So we have to go back. I am disappointed that we have to go through it again, but of course, what's safest is the best. I just don't know how I am going to look Owen in the eye next time. Safe to say, I am not getting the mom of the year award from O. At least not while he and I cannot have an intelligent conversation about why we are doing this.

When we got up to the ICU, Owen was having a little trouble breathing. They thought they would have to intubate him again. They took some x-rays and he had some fluid in his lung. We waited and they decided to let him breathe with just the help of some oxygen and see if it would work itself out since he was saturating okay.

The first two days were hard. He was hooked up to 5 machines. He had a central IV line, an arterial IV line, an IV in his hand. He was on morphine round the clock. He had a catheter called an OnQ for pain near the incision site. He was on oxygen. He had a huge dressing on. He was pale and puffy and could barely cry due to the intubation. We watched his heartrate and his oxygen levels constantly. He wouldn't make eye contact with Nick or I. He couldn't poop. It was not nice. It was miserable. The hospital was amazing. Their ICU was incredible. Owen had a nurse to himself. He made a peep and she was in our room over him. I didn't even change a diaper because by the time I checked it, she was in there and it was done. I felt helpless and was thankful that someone knew how to take care of him. I couldn't hold him or move him. I just kissed his forehead even though he would not look at me.

On day 3 he was still retaining too much fluid. It was around his heart and lungs. They had to give him diuretics to help him. At one point, they took his oxygen out to see how he would do and he immediately desaturated, turned bluish and vomitted. It was still a touchy situation.

Day 4, he saw his brothers. He talked. Even smiled. Still a lot of pain.

Day 5, he smiled some more. He touched his toys. He talked a little more. Still pain. They were able to take his O2 out. We were moved to the surgical floor, no longer in need of ICU level care.

Day 6 he turned a corner. He kicked his legs, shook his head no, smiled, touched his toys. Laughed at Elmo. Played peek a boo.

Day 7, we were both so ready to go home that Owen was a star for the nurses and we were discharged. Thank the Lord above.

These last two days have been good. There is still some pain and now a cough, which usually happens after he is put under. We are taking measures to help it go before it turns into pneumonia.

We are post-VEPTR. And although we have to do it again, the fear of the unknown will be a thing of the past and we will know what to expect and how to deal with it. It will be no less hard, but we will get through it.

I have to go now, but I will write a post over the weekend about the pretty amazing people we have around us and all they did while we were away. We love you all and owe you a tribute!

Thank you for the prayers and support everyone. We wouldn't have made it through this without everyone being behind us.