Scott and Susanne made it just by the skin of their teeth to get a wonderful dinner at El Pueblo's last night. Scott ended up getting a chimichanga and washed it down with a nice, refreshing margarita. As painful as it was, Susanne had to special order dairy and soy free fajitas, also known as "naked" fajitas. Even with no cheese and no sour cream, they were still delicious.
This morning, Scott and Susanne made it in time for the doctor's rounds. They all flooded into every corner of the room and each specialist spent time reviewing their assessments and any test results that they had. Susanne felt like she was a part of an episode of Grey's Anatomy. She was just waiting to see a familiar face. The best part of rounds was that they informed Scott and Susanne that Paxton was going to be discharged today. How exciting!
Paxton had another NG tube placed today. The nurses decided to try a different type of tape for his face. Scott and Susanne felt that it caused more irritation because, by the end of the day, there was a rash developing around the edges of the tape. They elected not to say anything and just fix it when they got back to the hotel.
Paxton had an occupational therapist evaluate him before he was discharged. She was actually an OT from the Regional Center for Newborn Intensive Care (RCNIC) and not from the floor that Paxton was staying on. The Padilla's friend, Kelly, made special arrangements for this specific OT to be able to be the one to evaluate Paxton. Kelly thought that Paxton would be better served by having someone who worked with all newborns evaluate him instead of an OT who worked with a variety of ages on the pediatric floor. Scott and Susanne loved this OT. She was very knowledgeable and informative. She made them realize that Paxton wouldn't focus on his toys in front of him if he could still see his parent's faces because he was so interested at staring at his mommy and daddy. It was amazing to see the difference when Scott moved out of his line of vision. The OT made a point to encourage Scott and Susanne to not to feel pressured to be in his face and talking to him at every play session. It was important for him to discover his environment some on his own as well. She gave them different approaches to try and other options for him to make his learning time as non stressful as possible. It was important for Scott and Susanne to also support his major joints and muscle groups during these sessions. This way he would feel supported and more comfortable.
Immediately following his OT session, the speech therapist stopped by to work with him one last time. Unfortunately, he was all tuckered out from the previous appointment that he did not have the energy to try to accept an oral feeding. They all had to say goodbye to the speech therapist since this was the last time Paxton would meet with her. She had been so incredible and supportive since day one. Paxton really seemed to like her a lot, as did his parents. If only Susanne could find this caliber of therapist where they lived, it would make everyone's life so much easier. The most important information they gathered from the speech therapist was that it was safe to keep trying to offer oral feedings. The studies proved that he was not aspirating his oral secretions or the milk that had been offered. She encouraged them to try feeding him in different positions so that he did not become position dependent when being fed. It was super important to give him positive experiences and have a very gentle approach. This was going to be easy because this was exactly what Susanne had been practicing all along.
The pulmonary team stopped by with the results from the sleep study. The good news was that there was no evidence of obstructive apnea throughout the entire night. This was a huge relief because of the concern for obstruction due to the retraction of his tongue secondary to the Pierre Robin Sequence. They did, however, notice very mild central apnea where the brain forgets to send the appropriate signals to the muscles that control breathing. In an ideal world, they would put Paxton on a trial of caffeine to see if that would improve the situation, but with his underlying heart condition, it would be too risky. They did mention that Paxton could have an apnea monitor if Scott and Susanne were interested. The cardiologist felt that it wasn't necessary and might be more of a source of frustration since the alarm tended to go off when it did not need to.
Scott and Susanne decided to take a nap while they were waiting for Paxton to be discharged. By the time everything was ready to go, Paxton was due for his next feeding. They decided not to throw him off of his schedule, so they had the nurse's set up his NG feeding before they headed out. Once they were ready to go, the nurse called for transport. It just so happened that the same lady that transported Paxton and Susanne yesterday was the one who showed up to take them to the car. They got to have one final joyride in the wheelchair. Scott had a wheelchair as well, but it was for all of the stuff that we accumulated while Paxton was in the hospital. Paxton's souvenir for his stay was a different animal wubbanub pacifier for each day he was there. The monkey will always be his ultimate favorite, but now they had additional buddies that Paxton could love on. The new additions included a red dog, a yellow duck, and a green frog. They were all super cute.
On the way back to the hotel, Scott and Susanne decided to pick up something quick for dinner. Scott spent the rest of the evening working on his dissertation. He was hoping to knock it out by the end of the week.
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