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)