Maddox is 6 weeks post Fontan. It's a relief and very surreal. For the last 3 years this was we looked forward to. The last planned surgery. Our journey is in no way over, he's not 'fixed', and any number of crazy things can happen, but this is the surgery that's going to give him his best chance at a 'regular' life.
We spent 16 days in the hospital. His surgery was September 6th. Dr. AK (Kaza) was his surgeon again, and it was really great to see him. When he came to chat with us before the surgery he was going on and on about how great we've done with Maddox. He was so impressed with how healthy Maddox is and how big he's gotten. It was like a huge validation that I'm doing okay with him.
Maddox was actually really excited to go to the hospital. He remembers being there in May for the heart cath. What he remembered was drinking sprite and watching movies, so he was really excited to do that again. I did my best to talk to him about why he was going back, but he's three and he really was just excited for the Sprite and the movies.
When we walked down the hall with the anesthesiologist it was surreal. Maddox was happy, I was nervous but calm, and Luke was strong on the outside as always. It seemed like just days ago that we'd made the same walk to take him in for his Glenn. It was crazy how familiar everything was even though it had been 2 1/2 years since the last surgery. Dr. Pribble took Maddox and Maddox was chatting his ear off as they went through the doors to the OR.
The waiting was long. We actually got to wait for part of it with a fellow Heart Mom, and another one came by to visit while we were there. So that was nice. It was great to have Judi and my parents there to support us as well. It's really hard being in a surgery waiting room with other families that are there for things like ear tubes. It's hard to be sympathetic (We've done ear tubes, and I get that anytime you are put under it's scary). But it's such a different situation and you see these families being so emotional over something that seems so minor to me, and you sit there for hours and hours and see the families coming and going as their kiddos are finished with procedures. I don't want to sound insensitive, believe me, I do get it. But it's just a hard place to be during that time. (There is talk of possibly having a different waiting room for heart surgeries, that would be so nice.)
We got a few updates, went for a few walks. We were coming back from grabbing a late lunch and we saw Dr. AK going down the hall. My first thought was "Why aren't you with my baby!" and then I realized he must be done. He was headed to the waiting room to chat with us, but since he found us in the hall we went to a quiet room to talk. Everything went as good as it could have. He talked about how they used to open the kids up and then decide what to do. Now the technology is so great that he knew what he was going to do when he got in there, and how he was going to do it. He gave us a piece of the conduit that he placed in Maddox. It's the craziest thing. I will have to find a picture and post it. It's like this soft material that holds it's shape but is pliable at the same time. Dr. AK said to give them an hour to get Maddox settled and then we could go see him. That was around 1pm.
Here's a video explaining the Fontan. Notice Dr. Gruber, he's our new Chief surgeon.
We were headed back to the waiting room to wait the last hour and Dr. Pribble saw us coming. They were just headed back to the CICU (Cardiology ICU) with Maddox. He stopped them so we could see our boy. It was crazy. He is so much bigger than the last time he had surgery. It didn't look as scary. He wasn't on the ventilator. I just wanted to hold him, but I couldn't yet. So we waited for the call that we could go back.
When Luke and I walked into the CICU I could here Maddox. He wanted a drink. We got to his bed (which happened to be the one bed I'd hoped we didn't get) and I tried to comfort him. He just wanted a drink so badly but he couldn't have one. We had a favorite nurse, one we'd had and loved during his first hospital stay, and she was really great. Personality wise, probably not my favorite, but she's so good at her job and I know she will take incredible care of my baby. They finally had to give Maddox some meds to help him relax and sleep. He was getting so upset about wanting a drink. It's hard seeing your baby want something so much, something so simple and available, but knowing it's in his best interest to wait.
Trina and Trudi brought Bailee up and everyone was able to see Maddox. He slept most of the afternoon and when he did wake up he only wanted a drink. Bailee handled it so well. She is so amazingly strong!
Luke and I stayed in the PICU waiting room that night, and surprisingly I slept. When we went to see Maddox before shift change that next morning, his nurse told us he'd been able to drink and didn't want to stop. They have to go slowly, and slow is not something Maddox is good at. After shift change the nurse was talking about how they would be moving us to the floor that day. I was shocked, and not prepared at all for that! Then she said "at this rate, you'll be home by Monday or Tuesday." I wish she hadn't said that. We were trying to prepare ourselves to be there for two weeks, and I knew her statement was unlikely to actually happen, and it was false hope. Maddox was able to eat and drink though, and was fairly easy to entertain. He still didn't feel great, but I was able to sit with him on the bed and he did really good.
They moved us up to the floor around 5ish and we got settled. We were in the treatment room though. It doesn't have a window and whatever is above it on the next floor is quite noisy. So I put in a request to move as soon as there was a room available. The benefit was that it's a bigger room, so with the extra family around it was nice. We had some visitors, family, fellow Heart Mom's, and our home teacher. We were able to attend church at the PCMC branch and really enjoyed that. I think it was Monday when we were moved across the hall to a room with a view.
Dr. AK wanted Maddox up and moving as much as possible. We started with a wagon ride on Saturday and then walking. The first time or two walking was rough, but Maddox was amazing. By Monday the boy was walking further than the nurses desk, and by Tuesday we were all over the hospital. It was interesting chasing him while pushing an oxygen tank and carrying 2 chest tube chambers. Once the first chest tube was out though it was easier.
Most of the days blend together for me. It was a lot of the same. We went for a lot of walks, enjoyed the playroom, played with the service dogs every chance we got, had music therapy visit a few times, and checked in on our other heart kiddos. That was a huge difference this time. I already knew who was going to be there and what procedure they were having (or waiting for). I could check in on them and see how things were going. We had a late night ice cream date, walks in the roof top garden, and definitely the sense of support and love. That is something I wish we could have had at the beginning of our Journey, but I'm so grateful for it now.
Maddox was really doing great, and in all honesty only had one thing holding him back from the overly-optimistic prediction of home on Tuesday. His body did (does) not want to get rid of this pocket of fluid hanging out around his lungs. We tried a fat free diet, we tried more diuretics, we tried more moving, and more blowing (as Dr. AK called it, pulmonary toilet). Everyday it was the same. Chest Xray looks the same, lets watch it another day. I was prepared for that every day, because I looked at those chest xrays every morning and they did look the same. I was still hopeful that my untrained xray eyes missed something and that they would come in and say it's better. It never was.
So we waited. We watched 3 BYU football games at the hospital. We saw friends come and go, and mostly we saw friends waiting. Waiting longer than we had. They gave me perspective. Anytime I was feeling down or antsy I could think of 3 people just down the hall that had been waiting a lot longer than me. They were my grip on reality. I saw that our waiting was not a roller coaster, it was simply waiting. We didn't have ups and downs, we just waited. I actually enjoyed those moments with Maddox more than I otherwise would have, knowing the stories of these other kiddos. 2 of them were waiting for hearts. Both of them had been living at the hospital for more than 100 days. They were on a roller coaster. Roller coasters make me sick. They probably make those mamma's sick too, but they did it anyway. You have to right? That's your baby you are riding the roller coaster for, and we'd do anything for our babies.
On Saturday morning, the 22nd of September, our 16th day in the hospital Dr. AK came in bright and early. He asked Maddox if he wanted to go home. You should have seen his eyes. "Home? Really?" It was the first mention of home from the one I'd wanted to hear it from most, the one I could actually trust to give me that news. Unfortunately, it's a lot of work to get out of the hospital. A lot more than getting in. It takes hours and hours. We packed up. We signed paperwork. We waited to see more doctors and nurses. We took stuff to the car. We filled prescriptions. We had the pink discharge paper in hand. I pulled Maddox around the CSU for at least an hour. Clutching that pink paper. Our ticket out of there. I went in the elevator by myself to get those prescriptions filled and I bawled. I was so happy to be going home and so heartbroken for the kiddos staying. Still waiting. Still hoping. I wished it were them instead of me. Give them their miracle, I could wait a little longer. But I also wanted so desperately to be home with my whole family. I don't like being in different places trying to hold it all together. When we got in the car around 12 pm, it was real. We were really headed home. Maddox was so excited. Luke was so happy. I was apprehensive, but ready. There was still fluid in his chest. We could be readmitted at any time. Was I ready for this?
We got home and things were chaotic and happy. I needed a nap, but got some other things done instead. Then the car died so I had to go get a new battery installed. Then the check engine light came on and I couldn't get it looked at on the weekend. And I was grateful it happened at home and not while we were trying to come home.
We had a chest xray the following Wednesday. It looked the same. We had a 2 week post-release check up. I knew we were being admitted. I packed our bags in preparation. I saw the chest xray. I heard the words. It looks the same. We'll check again on the 22nd. We didn't get admitted. I was shocked. We dropped a dose of diuretics. The fat free diet ended this past Wednesday. Yesterday restrictions were lifted. We go on Monday for a chest xray. I hope it doesn't look the same. But I'll take the same over worse.
Dr. AK did all that he set out to do. We've decided he did us an extra 'favor' and found Maddox's volume button. He turned it all the way up. He also gave him more energy than any one human being should be capable of holding. He gave him pink cheeks. He gave him easier breathing. He gave him another chance at life. I am and will be forever grateful to Dr. AK. As we were leaving the hospital I said to Luke "that could very well be the last time we see Dr. AK." That kind of makes me sad. Words cannot describe what I feel for him. However, I don't want to have to see him again. I want this surgery to be the fix that it really isn't. I want it to make his heart last forever.
Maddox is doing amazing. He doesn't know he's 'sick'. He is everything you'd expect from a three year old boy. I wish Dr. AK could transfer some of that energy from Maddox to me. We both go to bed exhausted and then wake up and do it all again. He is so naughty sometimes and I just smile. At least he's here with us. At least he's capable of being naughty. At least he's still mine. His cute nursery teacher said to me when I picked him up on Sunday. "You're right. He does have a lot more energy. He use to just sit in his chair so quietly." Her husband told me later in the week that he'd heard Maddox had turned into a little handful. He assured me that it was a good thing, and that his wife loves Maddox. I know she does. And she is right. He is a handful. And I am grateful.
The world lost a bit of sunshine 11 days ago. I went to the funeral on Saturday. It was one of the hardest things I've ever witnessed. If I feel the way I do about this, I can't even imagine how this sweet angels mother is feeling. It breaks my heart. This sweet girl was one year and 8 days older than Maddox. When I looked at her beautiful, peaceful face, I couldn't help but think of Maddox. When I hugged her parents I couldn't help but put myself in that place. It's not something that I've talked about, but it's something that I've thought about. A lot. How could you not when you are told that your one day old baby has a complicated heart defect and that they can't fix it. Throughout the service I felt so many different emotions. There was a moment when Grandma asked the Heart Mom's to stand up. I looked around. That was powerful. I think I counted 30. I bawled. We all did. Because we know that there are momma's who get it. Momma's who will be there if and when we need it. And not just on that day. But every day. As my sweet friend stated to dad "This doesn't end today. We will always be here."
And with that, I must go and rescue my house from the three year old super hero and his best friend Baseball.
