Nothing Will Stand In My Way

When Scott and Susanne arrived at the hospital this morning, Paxton was awake staring at his "Happy Valentine's Day" balloon. Paxton was enamored with its movement and shine.

Compared to yesterday, Paxton looked so much better. He seemed more comfortable and the generalized swelling had markedly improved. He actually looked like himself again. This gave Susanne and Scott a great sense of relief. Susanne's persistence for a cardiology consult and intravenous diuretics yesterday sure paid off.

Within moments of them being at the hospital, Paxton fell back asleep. It seemed like he had almost waited for them to arrive before closing his eyes. He wanted to make sure that they knew he was okay. Scott and Susanne watched Paxton sleep for hours. They couldn't believe that he was out for so long. It was important that he rest as much as possible especially since he had be up on and off over the last two nights battling pain from his recent procedure. It was nice to know that he was almost out of the 72 hour window of maximum discomfort.

When the nurse came by to give them an update, she informed them that Paxton had developed stridorous breathing overnight. It became so much of a concern that they had to intervene. The doctors were worried that his airway was becoming almost completely obstructed from all of the swelling that had occurred secondary to the surgery. They had to give him Dexamethasone, which is a steroid that aids in decreasing inflammation. They also had to provide him with supplemental oxygen so that his oxygen saturation levels would remain stable for him. Lastly, they tried positioning his head at a certain angle to optimize his ability to breathe. Since their medical intervention, Paxton seemed much more relaxed. The nurse did mention that Paxton had started his morning with an episode of gagging and ended up vomiting twice. Susanne wasn't shocked by this at all because this had been his morning ritual for as long as she could remember. Also, he had a huge bowel movement that migrated up his back and soiled his bed. The nurse had to give him a mini-bath. This was also not surprising because this was a definite Paxton trademark. Why else would he have been given the nickname "Poo Panny"?

The craniofacial team stopped by after lunch and informed them that they thought Paxton was looking good overall. The doctors wanted to postpone removing the suture that was connected to his tongue because of the concerning respiratory episode that occurred within the last twelve hours. They wanted to make sure to have a way to pull his tongue out of the way if he got into a critical situation. Also, they wanted to give the medication sufficient time to take effect.

Later in the day, Scott and Susanne got to hold the little guy. They took turns rocking him and comforting him. He was yawning quite a bit and even sneezed a few times, which appeared to be uncomfortable for him. Even through the pain, he managed to give them a smile for the first time since the surgery. This warmed their hearts and made everything all better.

Paxton was finally officially transferred over to the cardiology service, which is where he should have been the entire time. It was so important that Paxton's primary care be supervised by them instead of the craniofacial team because they didn't know the intricacy of Paxton's cardiac condition and how to manage it. They could only evaluate his progress as far as the cleft palate repair went. They wouldn't be able to adjust any of his cardiac medications or change the overall plan without talking to the cardiologist first anyway. It just made more sense this way.

Dr. Marx, Paxton's primary cardiologist at Children's Hospital Boston, stopped by again today to check in on him. He also wanted to make sure to talk with Susanne personally since he had missed her the day before. He spent a good bit of time going back over the most recent findings from Paxton's sedated heart ultrasound. He was more than impressed. He was actually surprised at the differences he was able to see with the sedated echocardiogram vs. the unsedated echocardiogram. Before, he didn't think that Paxton's right vetricle was growing or functioning at all. He had mentioned that Paxton would probably need his next heart surgery within the next year. Paxton would get the heart procedure that would be one step away from needing a complete heart transplant. This was scary news. Now, he thought that the right ventricle was growing. He witnessed it working well enough to pump some blood up through the pulmonary artery out to the lungs. This was confirmed with Paxton's oxygen saturation levels. His oxygen levels had been running above 85. This alone supported the idea that more than just the Glenn shunt was supplying blood to the lungs. This was fabulous news, especially to come from the horse's mouth. He mentioned that the goal for Paxton at this point was to switch back over to getting all of his medications through his G-tube instead of through his intravenous catheter. If he remained stable on that for over 24 hours and continued to tolerate his feedings well, then he could be discharged from the hospital. They were hoping that this would occur before Scott had to leave on Saturday.

Susanne and Scott thought that this great news was worth celebrating. They decided to have a do-over second attempt at Valentine's Day. They walked a few blocks to a different Mexican restaurant. They decided to switch up their cocktails this time. Instead of their usual margaritas, Susanne got a Corona and Scott got the house Sangria. They decided to be adventurous and try the cactus appetizer. It was better than they had anticipated, but it did have a weird aftertaste. Their meals were delicious. They had a wonderful time rejoicing in Paxton's overcoming another obstacle in his life. They were constantly inspired by his will to live and his refusal to stop fighting no matter what it took. His perseverance was remarkable.