Moebius Schmoebius

The first thing that Scott and Susanne learned when they got to the hospital this morning was that Paxton was being discharged today. YAY! Both the cardiology team and the craniofacial team thought that Paxton looked fantastic. The doctors had transitioned him over to all of his normal medications this morning and he was tolerating his feedings well.

Paxton had already had a busy morning. The suture that was attached to his tongue was removed and they repeated the bloodwork from yesterday to make sure everything still looked good. Their main interest was the electrolytes, which could be abnormal from the high doses of intravenous diuretic that he had been given. Susanne and Scott hated the thought of him having to get his blood taken again because it was such an ordeal. It was difficult to get a sample due to the awful state of his veins from overuse. Even though it pained them to think about it, they knew the importance of the information and that always outweighed everything. This was in Paxton's best interest even though he didn't view it that way. Luckily, all of his values were within normal limits.

Paxton was ready for a nap shortly after Susanne and Scott had arrived. This seemed to be his pattern this week. While Paxton was sleeping, the nurse spent time preparing Paxton's discharge instructions and gathering the appropriate items he needed to go home. Susanne and Scott had been given some things to do as well before he could go. They had to go to the pharmacy to fill his prescription for pain medication. This was definitely at the top of their list because they didn't want him to be in any discomfort. They also inquired about getting a copy of Paxton's most recent heart ultrasound. Lastly, they went to grab some lunch to bring back to the room because even though Paxton had been cleared to go home, it always took the medical team a few hours to get everything ready for him to leave.

As they were waiting, someone approached them about doing another research study. This time the study was attempting to find a genetic link to congenial heart defects. There were two groups performing similar research that wanted to have access to Paxton's information. The requirements were simple...they just needed blood from all three of them. Since Paxton had already been poked earlier that morning, they decided against getting another sample from him. Instead, they took multiple swabs of Paxton's mouth to evaluate his DNA that way. Susanne and Scott were escorted to a different part of the hospital to get their blood taken. Susanne had no problem doing this anymore. She had to get over this fear during pregnancy when she had to get it taken so many times. Scott, on the other hand, still hated the thought of it. It was the process of the blood actually being drained or pulled from his body that grossed him out. Even though he was apprehensive, he decided that he would do anything for his baby boy.

Later that day, Susanne checked her e-mail account. She was beside herself with what she found. She received a message from the neuro-ophthalmologist who Paxton saw in January. She had been investigating whether or not Paxton could still be considered a candidate for Moebius syndrome. Susanne and Scott were pleased to read this e-mail:

"Hi Mrs. Padilla,

I did hear back from Dr. Engle, one of the nation's experts on Moebius syndrome. She reviewed Paxton's pictures (including the ones that you had sent to me in email), my findings, neurology findings, and MRI findings.

Dr. Engle agreed with the conclusion that Paxton does not have the features of Moebius syndrome and would not pursue any further work up towards this diagnosis. For this reason, she would not recommend a more detailed MRI to be done to look for MRI related changes that can be seen in Moebius syndrome. Thanks for your patience. I hope that this is helpful to you.

Sincerely,

Gena Heidary, M.D., Ph.D."

Moebius syndrome had been one of the potential clinical diagnoses that Paxton received from the genetics team at Cincinnati Children's Hospital Medical Center back in May of 2010. They mentioned that if Paxton didn't end up having this syndrome, then he would likely be displaying features of a syndrome that had not yet been discovered. In turn, they would just have to name it Paxton's syndrome for the time being. So it looked like Paxton had "Paxton's Syndrome". Paxton really knew how to get himself noticed.

Just before they were about to walk out of the hospital, Paxton had an episode of respiratory distress. His tongue seemed to continually get stuck on the roof of his mouth, which made it challenging for him to breathe. It almost sounded like he couldn't get enough air when he would breathe in. His breathing was very noisy. He was crying and sweating. He turned blue and couldn't catch his breath. Susanne got nervous and paged the nurse. After the nurse evaluated Paxton, she contacted the doctor on call to assess the situation. The doctor felt that he looked okay. She was certain that these episodes would lessen over the next few days as Paxton adjusted to the new structure of his mouth. Even though it was scary to watch, Paxton recovered well on his own.

Finally, it was time for Paxton to be discharged. They were instructed that Paxton would need to be seen within four to six weeks for follow up from his cleft palate repair. If all looked well, then Paxton would need to come back again at 18 months to be seen in the craniofacial clinic. Paxton would be followed by this team for the rest of his life. Depending on his age and his progress, this would change how often he was seen and by whom after the initial appointment. The cardiology department wanted to see Paxton back in eight to ten weeks. This would put him six months out from his last major reconstructive heart surgery. Paxton would be sedated at that time to get a second MRI of his heart. This would give the doctors more specific information on the state of Paxton's condition. While he was under sedation, they would also perform another echocardiogram. Hopefully, his heart will have had time to grow more. Susanne and Scott thought that it would be ideal to just combine the appointments. It looked like they would be heading back up to Boston at the end of April.

After they got appropriate instruction for Paxton's post-op care, they broke free. It was nice to have Paxton back under their care. They knew he would be exhausted from his stay in the hospital. They were hoping that he would just sleep right through the night.

Once Paxton was settled in, Susanne and Scott went out to have one last date night before Scott had to leave to go home tomorrow. They decided to be a little more low key this evening and go to the food court that was on the way to the hospital. They had a lot of different food options and it was much cheaper. It was so nice that Scott was able to be there from start to finish this time. Usually, he was only able to be present for Paxton's actual surgery day and a few days afterwards. This time, he was able to be there before Paxton was admitted, for the surgical procedure, the hospitalization, and discharge. This was not only great for Paxton, but Susanne as well.