Looking Good

When Paxton was moved to the intermediate care unit, he went from having an entire room to himself to having to share the space with another patient. Susanne was used to this because four out of the five times Paxton had been hospitalized, he had to share his hospital room with someone else at some point. This time Paxton's roommate was one month old. He had a congenital heart defect that had required surgery pretty soon after he was born. He was recovering well, so much so that the plan was for him to be discharged tomorrow. The mother of the child had been staying in the room with the baby every night just like Susanne. Over the last few days, Susanne got to know more about this family. Unfortunately, the mother had been deemed unfit to be a parent and would be going home today without her baby. The boy would be transferred to a foster home tomorrow with minimal visitation rights until the mother cleaned up her act. The father in the situation was also deemed unfit. He was currently on probation for a misdemeanor of some sort. He was only allowed to visit once with his child and he had to be supervised by a police officer the entire time. Susanne gathered that they both appeared to genuinely care for their baby, but they didn't have the innate ability to read his cues. Throughout the last few days, Susanne noticed other problems as well, like the fact that the mother would not even wake up when her baby would cry overnight. Her baby would cry one to two times a night and no matter how long or how loud he cried, his mother would not budge. The nurses ended up setting up a deal with Susanne. They requested that she page for them when he would cry so that they could take care of his needs. They were all continually shocked that the mother never did wake up anytime the baby cried. How sad! What was even sadder was that Susanne couldn't sleep because the other mother snored so loudly! Susanne didn't have ear plugs so she resorted to putting cotton in her ears that the nurse provided, using headphones that she got from her flight, and covering her head with a fleece. Nothing seemed to help. Could someone please get a Breathe Right Strip...STAT!

Paxton had multiple doctors stop by his bedside to evaluate his progress. Today was the first time they had mentioned that he may be able and ready to be discharged tomorrow. Susanne was in disbelief. She had been told many times before that Paxton would need to stay in the hospital a minimum of two weeks with the potential of it being closer to a month. Since Paxton was recovering so well, the doctors could not think of any reason to keep him longer. This was awesome news, but she needed to start looking for flights ASAP.

Susanne got to bathe Paxton for the first time since his surgery. His nurse helped her to make sure she didn't get his incision or catheter wet. He seemed to feel much better. After his bath, he got a new hospital gown...or as they call them in Boston, a Johnny. Paxton always looked super cute in his Johnny.

Susanne had to take Paxton down to radiology for another chest x-ray. It was a good excuse to take Paxton for a walk in one of the hospital strollers. Paxton had a grand old time. He was smiling the entire way down to the second floor. After the cardiologist had a chance to review the radiographs, he informed Susanne that they were looking markedly improved. There was only mild edema present. The diuretic was doing a good job of removing this excess fluid out of his lungs. The heart size looked tremendously better, which was a result of the recent surgery. What wonderful news.

A pediatric psychologist through the cardiac neurodevelopmental program stopped by to do an assessment on Paxton. She spent an hour interacting with him trying to get a reliable picture of his developmental status. She showed him a variety of toys and evaluated his ability to track their movement. She read him a book to see if he was processing what was on each page. She revealed a series of pictures and would rotate which images she would show him to see how long it would take before he lost interest. She observed Paxton's movements when he was trying to play. She noted his ability to grab, reach, and swat at toys. She had Susanne try to elicit a smile and even a laugh. Luckily, she was successful. Paxton also participated in a conversation of cooing with Susanne. He was such a ham. He did his best to show off his skills. Hopefully, by the time Paxton came back in for the next assessment, he would have continued to improve greatly. The reason that this program even existed was that over time they had found that infants born with congenital heart disease that were hospitalized in the cardiac ICU at birth were at greater risk for developmental delays or deviations. Their end goal was to be able to detect these issues early and address them to try to prevent negative long term effects.

Susanne was excited that she would possibly be taking Paxton home tomorrow. This would be such a huge milestone in his journey. Now she just needed to get to bed so that the big day would come sooner than later.