Frustration

Susanne and Scott had to get up extra early this morning to make sure they were out of the house on time. They were both going in different directions, but they needed to leave around the same time. Susanne had to get Paxton to an appointment in D.C. by 10:00am and Scott had an interview to be at by 9:00am. Once again, the biggest issue was rush hour traffic. It was starting to seem like there was no way around it.

Susanne got to Children's National Medical Center on time, however, it took a small miracle to transport everything into the building which included Paxton, his NG feeding, stroller, diaper bag, purse, and pump. Susanne continued to feel like a three ring circus wherever she went.

They finally made it to their appointment. All present and accounted for. Once they were in the exam room, a resident came in to get an initial history. It appeared to Susanne that they were really unsure why she was there. She tried to explain that they were there for a second opinion and were really interested in getting a feeding team involved to help Paxton progress. It had been somewhat of an uphill battle with Paxton's oral feedings since he was discharged from the hospital. Susanne had been desperately seeking assistance, but came up empty handed each time she contacted one facility or another. She was hoping that the doctors at Children's would see her need and get something set in place. Paxton was losing precious time. Finally, the craniofacial surgeon came in to evaluate Paxton. He, too, seemed clueless as to why Susanne was there. No one seemed to understand, with the exception of Susanne's pediatrician, the importance of having Paxton closely followed by a team of people that could work with him on his oral feedings. People either wanted to approach the feeding issue from a cardiac stand point or a Pierre Robin stand point, but no one was taking both into consideration. Each diagnosis posed its own set of problems, all of which needed special attention and a keen eye. Susanne felt like she was getting more help from her sister and family friend who were both pediatric occupational therapists. They both had felt that Paxton had been released from the hospital too early and that there was a lack of concern on the doctors' part about his poor success with oral feedings. This was definitely frustrating.

The craniofacial surgeon thought that Paxton may not need the jaw distraction surgery, but only time would tell. He mentioned that his team of people would not need to evaluate Paxton again until he was seven months old. The cleft repair would soon follow between nine to twelve months of age. The doctor thought that Paxton's cleft was minor compared to the ones that he had evaluated before and that he should have no problems with advancing in his ability to handle oral feedings. The thing that he kept forgetting was the fact that the cardiac issue was the bigger challenge with successful feeding.

Once again, Susanne had to pump in the car. This time it was in the parking garage of the hospital. This was getting pretty ridiculous. Before heading out, Susanne set up Paxton's NG feeding. It was going smoothly until Susanne looked back at Paxton in the mirror and saw that he had pulled out his NG tube halfway. Susanne had to pull over to put it back in place. He was getting better and better at figuring out ways to remove his NG tube. What a stinker!

They finally got home two hours later. They were excited because Auntie Ann was coming to visit. She came bearing gifts. Susanne was given a beautiful necklace and Paxton was given a super cute bear named Carmel and a book that Susanne had been wanting to get him for a while. They had a fun afternoon full of playtime and laughter. Time seemed to fly by and then Ann had to go. This made Paxton very sad. He hoped that she would be able to come over again sometime.

Susanne waited around for Moppy to arrive. They prepared for their day tomorrow and got ready for bed hoping to get some sleep.