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Saturday, April 7, 2012

Yesterday was one of the longest and most emotional days of my life. As Landon was in the OR they would call us with updates of what was going on. Our hearts would jump every time the phone would ring. Finally we got the call that they were closing and the surgeon would be out to tell us how everything went. Those were a very long 30 min! Dr. Bryant finally came out and asked us to come back into a room with him. We followed him into a room with a couch and a whiteboard. He drew a picture of a heart and began to explain what they did in the OR. Honestly I really don't understand so much of what he said, but when he was explaining about the hole that they accidentally made during the heart cath. He said that before the surgery there was a lot of blood flowing through it, but after the surgery there is NONE. "This is amazing!" Those were his exact words. He was blown away. He said that the hole is pretty much all thick muscle and should just close on it's own now and not be a problem. I just cried and squeezed Ryan's hand. Another miracle!!

He went on to explain that they were successful in opening the valve and that it is working good, but that it's not all perfect.  He is still receiving the PGE medicine that's keeping the extra valve open.  The doctors don't know if his heart is depending on this extra valve or not.  If Landon's heart needs this extra valve then they will go back in his heart through the incision that was already made and they will sew in a new man-made valve for him that will grow with the heart.   This operation won't require Landon's heart to go on bypass so that's good, and the surgeon assured us that he had done this type of procedure many times and that there were almost no risks involved.  We won't know exactly how the doctors will want to fix everything for a couple more days.  The nurses are slowly weaning him off of the ventilator and the PGE and the other medicines to see how he reacts.  After that the doctors will have a better idea of what the heart needs to pump Landon's blood and fully saturate his lungs and body.  Also, the right ventricle may still be a problem because it is now pumping extra hard because of all the changes they've made. this squeezing is putting a lot of pressure on that side of the heart now so that is another thing they want to keep an eye on. He said that Landon was on his way back to the PICU and we would be able to see him soon, but to be prepared because he would be blue. After he left I cried, this time it was tears of joy not fear. I feel so blessed beyond measure to have this child who God is using to AMAZE the doctors. I realized that through what we thought was a setback and complication to the surgery God used it to bring Himself glory. That just blows me away!

We all went back up to the PICU waiting room until they said that ryan and I could go see him. I was prepared for the worst. When we got there, there was still quite a few people in his room trying to get everything hooked back up. It was extremely hard to see our baby covered in cords and tubes. Even more than we were used to seeing. He has a long bandage over his chest so we couldn't see the incision just a tube coming out of it pumping out the blood from the incision. Soon after they brought him back they did an echo to see how the right ventricle was pumping. This was one of the hardest things for me to watch. Not because it is painful for him in any way, but just seeing them put the goop on his tiny belly and pressing that little wand thing into his little tummy reminded me of every time they did that to me. The realization hit me so hard that I cannot protect him anymore. I would do anything if I could go through this for him, but I can't. Wow, even now I'm brought to tears again. You just feel so helpless as a parent. We're supposed to be the ones protecting and supporting him and right now all we can do is watch our tiny baby fight through this. He looked so lifeless. Just this tiny body surrounded by people speaking doctorese and machines that are keeping him alive and monitoring everything about him.

While we were in the waiting room I received a call from Ronald McDonald house letting me know they had a room for us if we choose to take it. I told her I didn't know yet, that our son was in surgery right now, but I would talk to Ryan and get back to her later. My mind really wasn't able to think about anything except Landon then and the thought of staying away from him makes me really sad. Ryan and I talked about it though and decided that we should call back and accept the room and we could look at it and then decide if we wanted to keep it. So after Landon was settled in his room, we decided to go to the house and check in. I HATE leaving! It is so hard to drive away. It's hard to open our back door and see an empty carseat. We drove up to a huge white house with a statue of Ronald McDonald sitting on a bench out front. We went in and I was blown away at how nice it is. The house manager gave us a tour then handed us our keys. Before seeing the house we really didn't know if we would stay there, but after seeing it Ryan really felt like it would be in my best interest to stay there. He knows if I stay at the hospital with Landon I would probably go days if not weeks without getting fresh air. Sleeping on a pull out chair is not the best and lugging all of my shower stuff down a hospital hall every morning is not ideal. We both decided that the house has everything you could want... except Landon. The hard thing is he's the only thing we want. It was really an answer to prayer to get on at the house though. It usually takes a long time for families to be on the waiting list there, but we were only on for a day and a room opened. They have shuttle service to the hospital every half hour so I can park at the house and save a lot of money not parking at the hospital. They have supper provided every evening and lunch and supper on the weekends so I will save money on food. When talking with the social worker yesterday about it, she was helping me weigh the pros and cons and she said one of the best things about it is being around other families that have a child in the hospital. they are not worse parents because they're away from their kiddos. She said in order to be a good parent you really need to remember yourself and meet your needs too. It helped to hear her say that and I know it would be really good for me to talk to some other moms. So we decided that I'll keep the room.

Ryan and did sleep much better on a real bed last night. We got to the hospital this morning and Landon is doing good. He was stable throughout the night. They tried taking him off Dopamine (blood pressure med) but he didn't react to it well so they put him back on. Today is just going to be a recovery day for him. They are playing with the levels of the sedation medicine and fluid they're giving him . The goals he has are to be weaned off of the ventilator, PGE (med that is keeping valve open),  and the sedation medicine. It is tricky though because his body has been relying on these things for so long. It sounds like tomorrow they are going to stop the PGE and see how he does without it. Please pray that he reacts to it well. If we can get him off that we may be able to avoid another trip to the OR.

Tomorrow is our first Easter with Landon. This is exciting, but I'm also going to be really sad because Ryan will be leaving tomorrow around noon so he can get back to Bismarck :( I really don't know how I'm going to handle being here without him, but I know God will get us through.

I cannot thank you enough for your prayers. Yesterday we felt everyones love and the power of their prayers holding us up and carrying us through every hour. We are so blessed.

4 comments:

Amy said...

My heart goes out to you. I pray for little Landon whenever I think of him. Thank-you for sharing your story, it's a blessing to me and reminds me not to take my daughter's health for granted. Hang in there, God is on your side!

Amy
Reno, NV

Krista said...

Just wanted you to know we are praying for you, Ryan, & Landon. My mom is praying for you too. We've been keeping updated with your blogs/facebook. We will continue to pray for his recovery & everything to function as it should as he is weaned of medications.

The K. Family said...

Thank you again for updating us. It is sure nicer to pray when you know how to pray!

The McCanne's said...

We will be praying for you all upon every remembrance. Your attitude is a great testimony for God and for others to see. Keep looking up to our Heavenly Father!
The McCanne Family. (Rebekah K.'s family)