Paxton had his first follow-up appointment with his cardiologist this morning. Susanne had to set up his feeding in the car for the ride over and also on the way back. She almost felt out of practice because she had not had to do that in awhile since Paxton had been in the hospital on and off for the last two months. Luckily, she left the house with plenty of time to spare.
Paxton continued to weigh right around 15 lbs, 4 oz. He had not really gained any weight for a few weeks. Susanne was initially concerned, but the cardiologist said that they expect patients who have had recent heart surgery to actually lose weight. She was more than thrilled that he had maintained his weight from before the surgery. His oxygen saturation levels were still within the mid-eighties which was to be expected as well because they had left the hole between the two upper chambers of the heart open. He was still circulating mixed blood throughout his body for the time being. The cardiologist was so relieved that Paxton looked so awesome. She thought that his color looked good. His heart rate and respiration rate were actually within the normal range for an infant his age. This was all so amazing. His new big boy heart was doing well.
During this appointment, Paxton got a follow-up ultrasound of his heart since it was already two weeks post surgery. Overall, the new and improved tricuspid valve was working well. For the first time in Paxton's life, it was doing the job that it was designed to do. Also, the Glenn shunt was intact and helping Paxton out tremendously to get enough blood to his lungs. There was still moderate dysfunction of the right ventricle. It did not seem to be improving much at all. The hope was still that the right ventricle would gain strength and become more normal over time as Paxton got older. There were no guarantees, but Paxton had continued to beat the odds thus far so it wasn't worth giving up hope now.
After two hours, they were finally finished with the appointment. Susanne was able to get Paxton home and down for a nap before his next appointment with his occupational therapist. Susanne was excited for today's session. It would be the first time that they would attempt to offer Paxton solid food by mouth. He had never been able to handle liquids in the past whether it be water or breast milk, but the therapist thought he was ready to try something thicker in consistency. They already knew that he wasn't able to swallow normally, which was why he tended to panic when any fluid was put in his mouth. They were hoping that with the pureed food, he would be able to take more time to figure out what to do with it.
Paxton was so exhausted from the appointment this morning that he was still sleeping when the therapist arrived. Susanne had to wake him up right before they started. She hoped that this would not hinder their plans for Paxton. They started slowly by doing some facial massage first. He was resistant at first and even cried just a little bit. Once he was allowed to wake up some on his play gym, and had cleaned out his system, he was ready to go. The therapist had brought pureed bananas to try as his first solid food. He was more accepting of the food than either of them had anticipated. He seemed curious and would move his tongue forward to taste it. Also, he actually opened his mouth when they would bring the spoon towards his mouth. They gave him about ten tastes of the food before they called it quits for the day. They didn't want to push him too hard especially since it was his first time. They wanted it to be a positive experience so they ended on a good note. The most encouraging part of the entire session was that he didn't gag at all and he actually swallowed the pureed bananas...even if it did take him few minutes. Way to go Paxton!
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