Scott and Susanne arrived at the hospital around 8:30 am to make sure that they did not miss a thing. Upon arrival, they noticed that the nurses had so kindly swaddled Paxton up nicely in lots of receiving blankets. The problem with this was that Paxton got overheated very easily. Susanne had mentioned this when he was admitted yesterday, but they must have forgotten. Most babies would love to be swaddled all nice and cozy like he was, but for him it made him miserable. Susanne immediately noticed that he was drenched in sweat and he was basically panting. This was not really helping him to gain weight by burning all of those calories. As Paxton was waking up, when Susanne was unswaddling him, he recognized her face and gave her the biggest smile. This was a precious moment.
The speech therapist stopped by Paxton's bedside for his 9:00 am feeding to see if she could get him interested in his bottle. She had some success, but she could definitely see how sensitive he was to anything going into his mouth.
The cardiology team came by to touch base and get a medical history. They discussed their experience with children with Ebstein's anomaly and went over the diagnostic tests that they were interested in performing during Paxton's hospital stay. He would basically get a lot of the same tests repeated that he had already had done by his cardiologist back home. In saying that, the doctors weren't expecting to discover any major change in the status of his heart condition, but it would be a good baseline for them to be able to make their own assessments. After they gathered all of the information that they needed, they planned to discuss Paxton's case at their conference on Friday. Once they got everyone's input, they would be contacting Scott and Susanne with their thoughts and suggestions.
Paxton did well throughout the ultrasound of his heart. They usually have to sedate their patients in order to be able to get the best results, but Paxton slept through most of his ultrasound. The only part that he really disliked was when they put the ultrasound probe on his neck area under his chin. It must have been uncomfortable for him.
Paxton had his barium swallow study scheduled for around 3:00 pm. When they came to take Paxton down for the test, they informed Susanne that the way he would get down to radiology was by her carrying him while they pushed her in a wheelchair. This was Susanne's first time ever in a wheelchair. Both Paxton and Susanne had such a fun ride together. Paxton especially liked the extra breeze that they got from their trip.
Paxton's mommy and daddy were very excited because they got to stay in the room during the procedure. Paxton's daddy ended up vidotaping the entire process, which was really cool. The way that the barium swallow study worked was that they gave Paxton a variety of barium liquids that were different consistencies and took continuous x-rays to get real time moving images. This way they could follow the liquid from the time it entered his mouth to when it emptied into the stomach. The information that they gathered showed that Paxton had difficulties with the oral phase of swallowing. This was the phase where Paxton should be able to voluntarily organize the food to go from the front of the mouth to the back of the mouth in preparation to be swallowed. He was very protective and resistant to any fluid in his mouth. He was very guarded and it was easy to tell that he was anxious during this process. The great news was that once the food reached the back of the mouth, near his pharynx, he was able to swallow the liquid appropriately. This confirmed that the involuntary part of swallowing was intact and he showed no evidence of aspiration of the liquid into his airway or lungs. This made the doctors comfortable with the decision to allow Scott and Susanne to continue to try to feed him by mouth. Once the study was over, Paxton was a hot mess. He looked like he had gotten into a jar of Marshmellow Fluff. What a cute little fluffernutter.
Susanne and Scott stayed well into the evening until Paxton was transported to a different floor for his sleep study. Earlier in the afternoon, the nurses needed to place an IV catheter in one of his arms so he could receive fluids throughout the evening to prevent dehydration. His vessels were so scarred up from all of the poking and proding he endured during his initial hospitalization. They were so bad that the nurses were smart enough not to attempt to do it themselves and instead called in an advanced team of phlebotomists. Luckily, Paxton only had to be poked once. The phlebotomist got the catheter in on her first try. Paxton's mommy comforted him the entire time and he was such a brave, big boy. Right before he was relocated the nurses removed his NG tube. It could not be in during the sleep study because it could cause false positive results for obstructive apnea. No one wanted to risk that.
Once they all arrived in Paxton's new room for the night, the nurses started hooking Paxton up to every wire known to man. He had more wires connected to him for this study than he did after his heart surgery. He looked really pitiful. It was difficult for Susanne and Scott to see him in this state. It definitely took him a while to settle down. Once he finally fell asleep, Susanne and Scott left for the evening. They were hoping to make it to the Mexican Restaurant near their hotel before it closed. Andale, Andale, Arriba, Arriba!
No comments:
Post a Comment