Day 53: False Alarm

Scott and Susanne could hardly manage to focus on anything, but getting to take their son home today. This had been a long time coming. They got to the hospital earlier than they ever had since Paxton had been there. They were so early that they even had time to eat breakfast in the cafeteria. They spent time reminiscing over the past two months and how relieved they were that this day was finally here. Paxton's nursery had been ready for him since the day he was born. Scott and Susanne were excited to show him all of his fun books, toys, and clothes. The animals were also ready to show him their toys and see if he would like to share some of his toys with them.

Scott and Susanne got back to Paxton's room just in time for a demonstration of all of the equipment that he would be sent home with for his NG feedings. Paxton actually got his own IV pole! After the demonstration, Scott and Susanne got very frustrated trying to convince the RN that the wrong formula had been delivered. Enfamil Lipil is a milk based formula. He was supposed to be sent home on Nutramigen Lipil, which is a hydrolyzed protein diet for children with potential milk protein allergies. If Susanne had not caught the mistake, then this whole diet trial would have been void. The nutritionist also stopped by to give them the recipe for Paxton's formula and discuss his feeding schedule.

Scott and Susanne received a quick lesson in nurse lingo on how they rate the cuteness factor of a child. The worst rating was FLK which stands for funny looking kid. If you ever hear a nurse use this terminology when referring to your kid, you may want to look in the mirror to see if you have contributed to the unfortunate situation. The next level up would be if they said that you had a sweet baby. This means that they aren't quite cute enough to get acknowledged for it, but they may not be as bad off as the previous description in which that child was beaten with the ugly stick. The best category to be in would be if they told you that you have a cute baby. You would get extra points if that cute baby is considered one that they would babysit. Paxton got the highest ranking in the hospital. The nurses say that it is very rare for so many of them to want to babysit the same baby.

The cardiologist came to talk with Scott and Susanne later in the morning. She informed them that Paxton's respiration rate had increased to a concerning level overnight and that he had a certain type of arrhythmia that had not been noted before. Unfortunately, the overnight nurse had erased the ECG strip from the monitor at the time when this episode occurred. The overnight doctor ordered a more thorough ECG to evaluate his heart rate and rhythm a little closer. Luckily, that came back looking good for a patient in Paxton's condition. Still the cardiologist had to deliver the bad news. Paxton would not be going home today. She felt that monitoring him for 24 more hours would give her the appropriate peace of mind needed for her to feel comfortable enough to send him home. Scott and Susanne could not argue with that.

The cardiologist spent some much needed time with Scott and Susanne addressing a lot of their questions and concerns. She made sure to tie up any loose ends and was determined to make them feel comfortable with Paxton's long term plan.

Per Susanne and Scott's request, an ear, nose, and throat specialist stopped by to evaluate Paxton and assess his status. Cen with Pierre Robin tend to have long term issues with sinus problems, hearing problems, and speech problems. Overall, the doctor thought Paxton looked great. His ear canals and ear drums looked great. She confirmed that his hard palate was intact and that only the soft palate would need to be surgicaly repaired when he was closer to a year of age. The best news of the day was that she verified that Paxton would not need a tracheostomy. This was a huge relief for them. This doctor was very thorough and put their minds at ease concerning his Pierre Robin issues.

Later in the day, Paxton had a car seat challenge where he was placed in his car seat for an hour while still hooked up to all of his monitors. The goal was to see if his oxygen levels, respiration rate, and heart rate were stable while he was in the sitting position. He passed with flying colors. He ended up falling asleep for the last half of the test. He is always so cooperative.

Susanne and Scott ended up going home empty handed once again. They tried to remain positive since his homecoming was only pushed back for another day. They decided to take this opportunity to get some good quality time in with each other since tomorrow their lives would change forever. This was much needed, especially since last night did not go according to plan. Hopefully, they will get some much needed rest before tomorrow. Let's hope that tomorrow will truly be the "BIG DAY".