Paxton was admitted into the hospital at 9:00am this morning. He had a private room with it's own bathroom which was nice. It was amazing how comfortable Susanne was in the hospital setting. It was not surprising since Paxton had spent the first 8 weeks of his life in that environment. It was definitely a different feeling for Scott and Susanne this go-round. Instead of being worried, anxious, emotional wrecks, they were excited to finally get some answers.
At last, Susanne and Scott got to meet the core set of people that had arranged this meeting of the minds. They were informed that Paxton's primary doctor was going to be a geneticist that was also a licensed pediatrician. Through their department, they would consult with other medical professionals that may have insight on Paxton's health status. After all was said and done, they would meet with them a final time to put all of the puzzle pieces together to see the big picture. This made Susanne and Scott very happy. Why had it been so difficult for everyone to get this concept in VA and DC, but for the team at CCHMC it was a no brainer?
Paxton's day was booked solid with consults and tests. He was first evaluated by the genetics team. They did a thorough job with getting a complete history. Susanne came prepared with an outline of Paxton's history from the day he was born, through his stay at the hospital throughout the first 8 weeks of his life, up until now. She made sure to include the doctors' overall assessments, any tests that were performed, any turn of events, and follow up instructions. When they asked Susanne to recall events that occurred during her pregnancy, she was shocked at how difficult it was to remember those details. She came to the realization that her brain must have been completely overloaded at that point.
The speech therapist stopped by to meet the Padilla family and to do her initial evaluation of Paxton. She started off by working with him on the non-nutritive sucking by using his favorite wubbanub pacifier and a gloved finger. She was pretty impressed with his performance and she thought that he was better off than she had anticipated. Next, she attempted to try an oral feeding by using the Haberman bottle that Susanne had brought from home. She was able to get him to take about two to three mililiters by mouth in the sidelying position. This was pretty impressive especially since he had been refusing the bottle over the last couple of weeks. At the end of the therapy session, the speech therapist informed Scott and Susanne that Paxton was signed up for a barium swallow study the next day. They were hoping to get some good information from that test.
An ears, nose, and throat clinician stopped by Paxton's bedside to examine him and to perform endoscopy of his nasal passage and the back of his throat. Luckily, everything looked normal. This was a huge relief for Scott and Susanne. Before he left, he examined Paxton's ears for any evidence of fluid accumulation. This was typical for children that had Pierre Robin Syndrome. Paxton's ears continued to look healthy and showed no signs of infection. So far, so good.
Scott and Susanne's friend, Kelly, came in on her day off to be there with them to make sure things went smoothly. She made a point to be present during the times that he was being evaluated or receiving therapy. She wanted to be able to advocate for Paxton as much as possible. She also wanted to be able to make her own assessments from what she had seen or heard. Later in the day, she offered to sit with Paxton so that Scott and Susanne could grab something to eat. They had decided to purchase a couple of five dollar coupons to take advantage of a sweet meal deal that the hospital offered. For that low price, you could get an entree, two side items, dessert, and a drink. They went to the cafeteria and carefully made their selections. When they got to the check out line, the cashier informed them that they could only benefit from this deal if they ordered the food from the hospital room. After much discussion, the manager stood by the rules and would not allow them to use their coupons. Instead, Scott and Susanne had to put back over half of their selections. The hot items they did not want anymore were just thrown out, which made no sense to them. In the end, their lunch was twelve dollars for half the items. This kind of stuff always seemed to happen to Scott and Susanne.
The genetics team came back after lunch to touch base and to discuss their opinions. They did not want to give many details until all of the tests had been completed and the results were back. The one thing they did mention was that they were really confident that there had to be one underlying genetic disorder that had caused the other conditions to occur. This was confusing to Scott and Susanne especially since all of the genetics tests had come back normal.
Scott and Susanne spent the evening trying to recap everything that had happened that day. They decided to go ahead and use the coupons they had purchased earlier for their dinner. It ended up being perfect because they were able to spend more time with Paxton this way. They ended up leaving just in time for Susanne to make it back to the hotel to catch the first episode of "The Bachelorette". She couldn't wait.
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