Trust and Hope With a Side of Wait and See

One could probably guess how Paxton's morning went. He woke up gagging, so Susanne went to comfort him and try to get him settled down. It was always a race to see how quickly she could make it into his bedroom to try to prevent a volcano of vomit. Even though he was older and able to swallow a little bit better, she still worried about hm aspirating.

Once he was settled, she set Paxton up in his bouncer to allow gravity to help settle his stomach while she prepared his first bolus feeding of the day. The second she got downstairs, she heard him gagging again. By the time she reached him, Scott had come to the rescue. This was just another reason why it was nice to be together as a family again.

Susanne and Scott both had things on their schedule for this morning. While they were getting ready for the day, Paxton played quietly by himself. Susanne was hoping he would save up all of his energy for therapy.

Today they worked on oral motor development. Susanne and the therapist were thrilled that he was still taking a liking to the oral swabs. It not only encouraged a great suckle response, but also it provided him with little drips of water that forced him to practice swallowing.

After they warmed up, they moved on to offering a variety of food. The apples were the thinest in consistency, followed by the peaches, and ending with the thickest option which was peas. Paxton used to do the best with organizing and swallowing the thinner pureed foods, but now he seemed to do better with the thicker options. When Susanne offered him the apples, it prompted an immediate gag followed by vomiting. Once he recovered and regrouped, she moved on to the peaches. This also prompted a gag response followed by vomiting. Finally, she tried the peas. He handled a few tiny spoonfuls well, but still took a long time to organize in his head what to do with it. They didn't want to push him over the edge, so they stopped the session early. He was definitely tired by the end of it. It didn't help him out either that he didn't take his usual morning nap. He was yawning, head thrashing, and crying by the end of it all. Susanne knew she needed to put him right to bed because he had a full afternoon.

He ended up napping for about an hour before Susanne had to wake him up to head to his cardiology appointment. Paxton's usual cardiologist was unavailable, so he had to be seen by someone else in that practice. Susanne chose someone that had previously met Paxton a few times and knew his case well. She picked the doctor that she remembered really liking from Paxton's stint in the NICU. He stood out to her because he really took interest in her profession, but even more so in Boxers. He owned a few Boxers of his own. They had previously had multiple conversations revolving around this wonderful breed. She didn't know if this was the right approach to choosing the next best person to evaluate Paxton, but she at least felt like she knew him personally and trusted him with Paxton's care. This, to her, was most important when making such a decision. She believed in a strong doctor-patient-parent relationship. John Maxwell said it best when stating, "People don't care how much you know until they know how much you care". Moral of the story, trust goes a long way.

Paxton weighed 20lbs 2oz today. Even though he still remained in the less than fifth percentile category for his age, he was at least still gaining weight. After doing a complete physical exam, the cardiologist thought that Paxton looked great. He was impressed with his oxygen saturation levels, his skin color, and capillary refill time. He requested an echocardiogram of his heart to just ensure that everything was looking as good internally. He had just had an ultrasound done a little over a month ago at Children's Hospital Boston, but supposedly that is a long time in their world. The doctor's hope was that he would find evidence that the right ventricle had begun to grow with Paxton and was doing more work.

Susanne entertained Paxton while he laid on the table for his heart ultrasound. He was always such a good baby for all the poking and proding he received. He didn't even cry once this time and even almost fell asleep.

After giving the doctor time to review the results, he came in to give a status update. The cardiologist felt like the right ventricle didn't appear to have grown much in size, but there was a small amount of blood being pushed by the right ventricle up into the pulmonary artery to go to the lungs. Currently, the majority of the blood reaching his lungs to become oxygenated was still coming from the Glenn shunt that was placed in October. The hope was that over time, the right ventricular muscle would wake up and start doing more of the work. If this didn't occur over a short period of time, Paxton would be required to have another heart procedure called the Fontan procedure. This would mean that both of the major blood vessels that bring all of the blood back from the body to the right side of the heart to be pushed to the lungs for oxygenation would be directly connected to the pulmonary artery. This would cause the blood to pushed directly to his lungs and bypass the right side of his heart all together. For the moment, it would be more of a wait and see process. There was still time for hope.

Susanne got a lot of other great information from this visit. She learned that Paxton would be on Aspirin indefinitely to help prevent clotting, which was a bigger concern since he had the Glenn shunt in place. More than likely, he would also be on the diuretic, Lasix, long term to prevent fluid overload and congestion to the liver and lower extremities. Susanne was reassured that if he was showing evidence that his heart was failing and fluid was backing up, it would present itself in his abdomen and liver. Due to the Glenn shunt, there would be no evidence of any swelling in his head and upper extremities. The Captopril medication was not being used as an antihypertensive, but more so for decompression of the heart. It was a blood vessel dilator to help the blood flow more smoothly and allow the heart to pump blood more efficiently. Paxton may not need to be on this medication forever, but he required it currently. As far as the damage to the brain that was pointed out from the MRI, no one could say for sure if it was due to a congenital issue or from all of the anesthesia he had been under for his multiple surgeries. A major factor in all of this was that Paxton had been on a heart and lung machine twice before during his two open heart surgeries. Most people who undergo a heart operation go on this machine because of the difficulties of operating on a beating heart. The purpose of this machine is to allow the patient's blood to bypass the heart and lungs all together and get oxygenated and reinfused into their body by external means. This alone can contribute to immediate cognitive decline and risks for mini strokes. The long term mental damage in a child is never known until he or she is older. Susanne decided that this was yet again another thing that she would not worry herself over. She would rather just throw it on top of her long pile of "wait and see".

Paxton's nurse was supposed to watch him starting at 2:30pm. Due to having to reschedule his cardiology appointment from about two weeks ago, Susanne moved the time to 4:00pm. Susanne truly thought that they would be finished with the cardiology appointment within two hours and have enough time to make it home. Unfortunately, this was not the case. The heart ultrasound took an hour alone. When she finally got on the road and was heading home, it was poor timing. It was rush hour traffic and she was in the heart of chaos. She called the nurse back to change the time to 4:30pm and then again to 5:15pm. Time just kept slipping away from her. She finally made it home and got Paxton settled. Once he was sound asleep, she headed out again to run errands while the nurse watched over him. It was nice to get some things done that she had been putting off for a long time. By the end of the night, she was ready to crash herself. Paxton had the right idea.