The Glenn Surgery Day -August 7th

The long, not so anticipated wait has come, and is now on it's way away. Surgery #2 has been pretty good so far. The adventure actually started on Monday since we had to spend a bit of time at some pre-op appointments. We first met with the nurse practitioner to go over all of Kyler's health history and to discuss the plan for surgery day (i.e. when he could eat, bathing with special cleaning wipes, antibiotic ointment, etc.).

Then we adventured down to lab for a blood draw and to imaging for a chest x-ray. He hated the x-ray more than the poke, but wasn't a fan of either of them -I wouldn't be either.

Playing with his toes and his new fancy name band

Avoiding his nap, but being good

We surprisingly got done with all of that a lot sooner than we anticipated so Jacob was able to get some work done on the balcony that overlooks the city while Kyler avoided a nap so we watched helicopters, cars, and birds together. ;)

The boys hard at work

Watching all the helicopters

Random side note, but meaningful (at least to me) - the entire time we were up on the balcony there was a huge black and white bird that was sitting by us and making all sorts of little noises at us and Kyler would talk back to it.

My grandma passed away a few years ago and she was a huge bird watcher and lover. Ever since then I know she is close by watching over because I frequently see some really pretty birds that just seem to hangout nearby. I knew that this bird was just grandma hanging out, checking in on her great-grandson, talking with him, and letting us know she would be making dang sure everything goes okay (I may or may not get a little tiny bit of my stubborn side from her). After working and talking with Grandma M&M we went down to Temple Square and City Creek mall to do some wandering, talking, and a small Angie sized dose of retail therapy. Kyler loves exploring around in his stroller and was still determined to not take a nap so it was a win-win for everyone.

Monday night was a long night but not filled with long enough amounts of sleep for any of us. We made sure that Kyler was fed as much and as often as possible until he was cut off at midnight. Then Jacob and I took turns tossing and turning pretending to sleep. We woke Kyler up at 3:45 to attempt to feed him some apple juice just so we could hopefully fool him into thinking he had a full belly by the time wake up and breakfast time rolled around. No such luck! He hates clears! He hated the apple juice and hated water. Looking back now, it probably would have been better just to let him sleep through the rest of the night like he usually does. Oh well! Live and learn!

Tuesday morning we had to check in to the surgical area by 5:45! Way too stinking early! But, I would rather wake up early (aka stay awake all night) and have the early surgery than to wait around all day.

Pre-op was a bunch of waiting with intermittent bouts of craziness and people. We were able to have a great discussion with our favorite surgeon. We really can't say enough great things about him! We like and know a lot of great things about the cardiothoracic surgeons here at Primary's and you really can't go wrong with any of them, but Dr. Husain is top notch and we are so pleased to have him as part of our team. I particularly love that he cares just as much about Jacob and I and how we are doing as he does about Kyler and his heart and overall health and life. That's just unfortunately not a super common trait in healthcare sometimes. He was super pleased with how well he has been growing. He told us that he was going to be a bit aggressive in the operating room with a couple of decisions we have been keeping an eye on during our ECHOs. The first was the ASD (hole between the top two halves of his heart) and whether or not to take out the septal wall or not; the other was some stenosis (narrowing) of the right side of his Pulmonary Artery above where the band was placed during his first surgery. He did not want to do something that wasn't going to be necessary (especially because fixing the ASD would mean having to stop Kyler's heart and then restart it), but he wanted to make sure that whatever Kyler needed to have done would get done right the first time rather than having to come back for another surgery before the Fontan in a few years. Sounded like a great idea to us! I appreciated that he expressed some sympathy and apologized that having to go through this is simply not fair, and that he can only imagine how hard it is to get to know this child for the past 5.5 months and watch him develop a personality only to have to hand him off to a surgeon again and trust them to operate on his heart. He definitely is not wrong about that! I think he must have been a therapist or something similar in a former life ;) He is so easy to talk to and just gets it.

After our therapy and education session with the surgeon we were able to talk with the anesthesiologist, and much to our pleasant surprise it was the same one we had with Kyler's first surgery back in February. We love her too!!! She also commented on how big he got and how good he looks. (If only that message could have been passed on to the high risk weight watchers club a month ago :P -would have saved a great deal of stress and heartache). We signed all of our fancy papers and then took the walk down the most hated hallway of my life!!! I especially hate that at the end of that hallway is where we have to say our see ya laters to my little peanut buddy! The next step is equally as mean, you have to hand off your child and then walk back down the horrible hallway alone. Tears are also involved and all of the emotions start to catch up all at once. It sucks! But luckily, I have an amazing husband to literally hold me up and is my rock!!!

Stole the measuring tape and had a new toy to play with

So cute in his gown, pants, and socks that were about 20x too big

Finally gave up on breakfast and fell asleep with some smiles

Loves reading! 

Since I can definitely not wait in the waiting room, let alone for a 6-8 hour surgery, Jacob and I decided to go on a little date for breakfast. We went back to Temple Square to walk around and ate at the Nauvoo Cafe and then sat looking up at the temple while we talked and awaited updates. It was a little strange to see the temple grounds so sparse so early in the morning, but it was great to be able to walk around with hardly anyone else around and just feel the peace.

We then went back to the house to attempt a nap, but that didn't last as long as we were expecting as we awoke to a page telling us that Kyler's surgery was wrapping up and that the surgeon would be ready to meet with us soon. So we headed back to Primary Children's and luckily didn't have to wait too long (I really have come to hate waiting rooms!) before Dr Husain came up to talk with us. He was very pleased with how everything went, and Jacob and I were happy that it was done quicker than we were expecting. He did end up needing to place a patch on the pulmonary artery to keep it wide and open, and also took out the atrial septal wall to keep that wide open.

Waiting to talk with the surgeon

We ended up having to wait a while to get back to see him in the CICU - Have I mentioned that I really, really do not do well with waiting...not patient enough, hate not knowing what is going on, and so many emotions and bad memories of having to wait in waiting rooms. During our waiting they were able to extubate him (take out the breathing tube), and they were giving him blood when he decided to start waking up all pissed off and kicked out the IV making a bloody mess everywhere! He spent most of the day asleep and resting, but man when he would start to wake up he was not comfortable and let everyone know!!! He was pissed!!! They have now nicknamed him Jack-Jack from The Incredibles because of his blond hair and the fact that he goes from totally chill and okay to totally pissed and not okay in less than a second!

It's a trial and error balancing act to keep him comfortable and we're still trying to figure it out. It is super common and expected for these kids to be pretty uncomfortable after the Glenn surgery because it changes the pressures from the blood flow in his upper body. His head and arms now have 3-5 times the pressure that they did before the surgery so he has a pretty horrible headache, in addition to all of the surgical pains. Poor kid! He is a trooper and so tough!!!

The green things sticking out of his ears are indeed earplugs. Since he woke up so mad and there was so much going on with him and his friend next door, they tried decreasing as much stimulation as possible and made it quiet. 

Robo-baby during his EKG

Primary Children's is associated with the Ronald McDonald House Charities, and just down the hall from the PICU/CICU they have a few little rooms for parents to stay. Jacob and I were lucky enough to be able to stay there for the night, which was a big relief to be so close for the first little bit. We both tried to get a bit more sleep than we had gotten the night before; we know that Kyler is in the best and most capable hands and is receiving great care and on the road to recovery!!!

All of the workings of a post-op baby

For those that are curious about all of the tubes and wires- Day 1 includes:

• 3 chest tubes
• Foley catheter
• Arterial line (measures blood pressures continually)
• 2 Peripheral IVs (including 1 already kicked out)
• An IJ (neck central line IV)
• CVP monitor (Central Venous Pressure- measures the pressure close to the heart)
• Nirs monitor (attaches to the forehead to measure cerebral oxygenation)
• Regular pulse oximeter
• Heart monitor
• Pacing wires (wires that are connected directly to the heart muscle that can be used to help his heart contract electrically if needed - these are not hooked up to anything right now but there if needed)
• 4 different IV drips (Nipride to keep his blood pressure from being too high, Milrinone to help his heart squeeze better, Precedex to keep him sedated, and D5 1/2 NS to keep him hydrated). Also a couple of syringes for the art line and CVP)

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