Who, What, When, Where...Nobody Knows

It was difficult to function on limited hours of sleep. One would think at this point that Susanne would be a pro at this, but it never seemed to get easier. Susanne was thankful that Paxton did not wake up gagging at the 6:00am feeding, which he had done the couple days prior. She was hopeful that he would make it all day without having one of those episodes. Unfortunately, he decided to save it up for right before they had to leave for his cardiology appointment. His timing was impeccable.

Susanne was relieved to have Kerry with her again for Paxton's appointments. It was not only helpful to have a chauffeur, but also a second set of ears. The companionship wasn't half bad either. She was the perfect person to have along for the ride.

Paxton saw a different cardiologist today. His regular cardiologist was away on vacation. He ended up seeing the original cardiologist that diagnosed his problem on the day he was born.

Paxton weighed 14 lbs 3 oz today and was around 25" long. His growth rate was impressive, so much so that the cardiologist had to increase the dosages of some of his medications. His oxygen levels were starting to trend downwards a little, which was to be expected. This just meant that he was one step closer to needing his next heart surgery. Today, they were averaging around 79.

The cardiologist spent a lot of time discussing the endless possibilities for Paxton. No one was quite sure at this point which one of those possibilities would become Paxton's destiny. Paxton's medical records had been mailed to Children's Hospital of Boston, Children's Hospital of Philadelphia, Mayo Clinic in Minnesota, and discussed at the recent conferences held here in Northern Virginia. Also, he had been evaluated by the cardiology team at Cincinnati Children's Hospital that had their own opinions as to what surgery needed to be done. Paxton would need to come back in one month for follow up. From now until then, everyone would be trying to decide what surgery would benefit Paxton the most, when it should be done, and who should perform it. Ebstein's Anomaly was such a rare condition that they did not have any valid research studies available to reference to determine what would prove to give the best outcome. Susanne was informed that people with Ebstein's Anomaly vary so much with the severity of the disease and their clinical symptoms. Each individual usually required their own unique treatment plan. The only thing that they knew for sure at this point was that Paxton had severe Ebstein's and his heart would require addressing before the year came to an end. Susanne was anxious to see what the future would hold.

After the appointment, Susanne had to stop by her work to call back a client with some test results. She knew better than anyone that it was almost tortorous to have to wait to get answers in regards to a loved one that was sick. If she could help alleviate that extra source of stress for others, she wanted to.

Susanne was able to run a few errands because Kerry so kindly drove for her. Kerry was able to stay in the air conditioned car with Paxton while Susanne ran in and out of places. This made things a lot easier. Susanne still had to feed Paxton three times in the car as well as pump. It felt like the good ol' days.

Once Susanne got home, it was about time to feed Paxton again. Leah was able to squeeze in some therapy with him before he had to go down for the night. During this time, Susanne and Kerry were able to hang out with Cole.

After the boys went to bed, it was finally time to cook some dinner. Susanne had found a delicious recipe for Mexican style hamburgers. She followed the recipe some, but added in her own little twist. This was what she did best. She also decided to make homemade french fries in the fry daddy. By the time the food was finished, she was spent. She did not have any time to sit down all day. She couldn't wait to curl up on the couch and relax.