PA Band Surgery Day - February 16th

Looking back on the day of his surgery is so much of a blur, but still so fresh and can stir up the emotions all over again. I was still technically a patient at the U, even though we spent more time at Primary's with Kyler than I did in my own room. I really only ever went back for pain meds and meals, and to sleep. 

The day before the surgery we met our surgeon and he sat down with us for quite some time to just talk and to explain the surgery. I have to admit that I was a bit nervous about him because I had talked with a handful of other heart moms and they all had huge recommendations for a different surgeon. When we learned it would be Dr. Husain I had a little panic attack because it wasn't who we were expecting and we knew nothing about him. He was still relatively new to Primary Children's as their new Cardiothoracic Chief of Surgery and not very many of the nurses we talked to had worked with him or even met him yet. All of those fears and apprehensive feelings went away pretty much immediately once Dr. Husain introduced himself. He does have quite an impressive resume and background, but what impressed me the very most was how down to earth he is and that he is a family man. He came in to the room, invited our nurse and her orientee to join us,  pulled up all of the chairs and put them in a circle, and we had a pow-wow just to talk about everything. He explained everything with Kyler's heart, the reasons for doing the PA band, how the surgery would go, and what recovery would hopefully look like. He did so in the simplest of terms that made it all make so much sense! He related Kyler's blood flow to his lungs to a bunch of cars on the freeway. At the time, it was a 4 lane freeway and all of the cars could do whatever speed they wanted and go wherever they wanted, but we essentially needed to make it a 2 lane highway with speed limits and rules. He really took the time to ensure that we were all on the same page, that we understood everything, that there weren't any unanswered questions or curiosities, and that we felt as good about our newborn having open heart surgery as possible. He told us to keep track of all of the questions that we came up with, no matter how silly or small they seemed, and that he would visit us often to make sure that they were always being answered. The other thing that impressed me so much initially was that from the beginning it has never felt like we are talking to a heart surgeon - I have worked in the medical field long enough to see some live up to the surgeon stereotype of acting arrogant and/or above God, but Dr. Husain is about as far away from that as you could get. He is so humble, down to earth, and easy to talk to, but also confident enough that he is easy to trust and has enough fire in him that if things got intense he could turn it up and be loud and forceful (but without becoming a jerk). It really is like we are just talking with a friend! 

The day of the surgery came quick! We were originally told that we would be the 2nd case and to expect to go back to the OR around noon. Jacob wheeled me over that morning after a quick breakfast, morning rounds, and a dose of pain meds. We spent the morning taking turns snuggling the little peanut and signing consents and going through various research studies that they wanted us to take part in.

Paperwork

 Well noon came and went with no word. I, being the ever so patient person that I am, started to watch the clock even a little closer wondering when Kyler would be taken back. One of the nurses eventually came in to tell us that the first case ran in to some complications and was running longer and we would be ready to go around 2:00. So, that reset the waiting clock - I'm not a fan of it typically, but we were enjoying our snuggles together and our first baby smiles. 

Baby Smiles :)

During this time there wasn't a whole lot going on and our nurse pretty much just left us to ourselves, but was close by of course if we needed him. There was a lot of quiet moments and a lot of special moments with just being a new family of 3. Jacob was able to give him a beautiful and touching priesthood blessing that definitely helped me relax some. 2:30 came and went and still no word. Yes, that meant I was anxious. I had also missed a few rounds of pain meds by this point, which didn't make for a great combination. But there was no way that I was leaving Kyler! Luckily, I wasn't doing a lot of moving around so pushing the pain to the back of my mind and enjoying our time together as a little family was doable. This time the anesthesiologist came in and went over everything that she would be doing and we signed more consents. She told us we were getting close and hopefully soon they would be back to get us. The waiting continued. By this point it was getting late in the day and it was a Friday so we started to wonder if it were too much longer if they would just push us back until Monday morning. They reassured us that unless another emergent case came up we would not be pushed back. 

Mr. Wide Awake

Around 4:00 they finally came to take us back to the OR. We were able to accompany Kyler down to the little pre-op waiting area until they were all ready to go. Since we wheeled him down in his isolette we had our "Peanuts crib gang" (Charlie Brown, Snoopy, and Woodstock stuffed animals) - they encouraged me to take and hold on to one until he was done so I of course took the Woodstock with me. We talked with the anesthesiologist again, gave Kyler hugs and kisses, and said our see ya laters. Then came the hardest walk of my life! Turning around and leaving my new baby, knowing what was going to take place, and walking down a long drab hallway was Hell! It sucked!!! I made it to the double doors before losing it and just stood there in Jacob's arms sobbing hugging our little Woodstock! Our CICU nurse came up behind us and gently offered to walk us back to the CICU to get our things while we waited.

They had given us a pager so that they could keep us updated as things went along and so that we would know when he was coming out so we could talk with Dr. Husain again. There was no possible way on earth I was going to sit in a waiting room and just wait! I would go absolutely bonkers! We planned on going back over to the U to my room so that I could finally take some pain meds and eat dinner. Before we left Primary's though we had to move our stuff across the hall in to a different room due to some staffing rearrangements (this was already room #3 for the little guy). We made the move and  then made the trek back to the U where I was met with pills, dinner, and a bed. By this point I was hurting, emotionally a wreck, and just exhausted in every way imaginable. We got an update telling us that all of his lines (central line, art line, foley cath, etc...) had all been placed and that the surgery was officially starting and that we would get another update in about an hour. Jacob laid by me and we tried to take a nap since we were told to expect the surgery to take a few hours. 40 minutes later, right as I fell asleep, the pager went off again telling us that the surgery was just finishing up and that we could talk with the surgeon soon back in the CICU waiting room. Needless to say, we both shot up and Jacob wheeled me back to Primary's. It was a little nerve-wracking that everything was done already because we were expecting a couple more hours so we didn't quite know what to expect. Luckily again, we didn't have to wait in the waiting room long before Dr. Husain came in and sat by us. He explained that the surgery was done and that Kyler did great! Those words were immediately followed by the biggest sigh and feeling of relief of my entire life, which immediately caused the waterworks to start all over again. Dr. Husain recapped what he did, told us that we would be able to go back to his room to see him within the next hour or so, and then told us that we did a great job too and that he was proud of us. Those last words were a bit of a shock to hear, but really made a huge difference to me!

While we waited for word from the CICU team that Kyler was back in his room and all settled, we went down the hall where they have a piano that anyone can play. Jacob played a bunch of different songs that helped both of us relax some. We even had some of the nurses stop by and listen for a few minutes on their way home, and even had some stop to say thank you for making their day better (from the sounds of it, it was a pretty rough day on one of the floors). 

After what felt like another round of forever we were able to go back into the CICU to see Kyler. It was such a relief to see him, even if it was a bit intimidating with how swollen he was, all of the bandages, and all of  the tubes coming off such a little body.  His new nurse gave us a quick run down of what everything was and its purpose and then let us just be right up with him. It got even better when she said that Jacob and I could give him a "bath" to clean all of the "fancy soap" that they use in the operating room. We weren't really expecting to be able to really touch him much so it was such a good surprise to be able to feel like real parents almost as we were able to help out. We spent a good chunk of time bathing him and then simply being there with him, talking to him, and holding his little hand. It finally came to a point that we needed to let him rest  and we needed our own sleep. That night Jacob was able to spend the night just down the hall from Kyler in one of the new Ronald McDonald rooms for parents of kids in the PICU/CICU. It was a nice relief to both of us to have him be able to stay close by. It was a super long, stressful day, but also a day that I will treasure forever - it was full of tender mercies, priceless memories, and moments together as a family that I will forever hold near to my heart.

Bath time