So Insensitive

Susanne was excited that Paxton only had one more appointment before she could schedule the surgery for his G-tube placement. She could not believe how many doctors he had to see to get clearance for this procedure. In any case, it was always better to be safe than sorry.

Paxton's appointment was scheduled for 10:00am at DC Children's Hospital for a consult with a pediatric anesthesiologist. Susanne knew that she had to leave no later than 8:15am to arrive on time, even if there was traffic. Unfortunately, she was mistaken. By the time she got there, she ended up not having any time to spare. She tried to go as fast as she possibly could without endangering anyone. It definitely didn't help the situation that she had to park on the third floor of the parking garage as well as get a picture ID name badge made before being allowed to access the hospital. Also, it didn't help that she was carrying four bags and a baby.

Once they were called back, the nurse practitioner asked if she could assist Susanne with all of her things. Susanne gladly accepted the offer. It was a great opportunity to give her arms a minor rest. The nurse practitioner immediately commented on how heavy the bag was that she chose to carry. Susanne informed her that it was the bag that only contained Paxton's medical history. She was in disbelief.

Susanne spent the first part of the appointment going over the important highlights of Paxton's history thus far. She made sure to include the most critical information. The nurse practitioner kept getting paged and pulled out of the room, which made it difficult to know how much of the information she truly got. Finally, the anesthesiologist came in to discuss Paxton's history and what was to be expected from their end for the procedure. He did a physical exam to get an overall assessment of Paxton's current status and double checked the medications that he was on. By the end of the appointment, it was confirmed that Paxton would not need a general pediatric anesthesiologist, but one that specialized in pediatric cardiac anesthesiology. This was a key component in ensuring that he got premium care. Susanne was pleased with this decision and it made her more comfortable with having to put him under general anesthesia. She knew that if anything were to happen during the procedure, this person would be the most likely to be able to save his life.

The next step was for the surgery department to contact Susanne to tell her when the surgery for the G-tube was scheduled. They informed her that Paxton would have to stay in the hospital for a minimum of three days. She was hoping she would be able to stay with him the entire time. Although it would be tough for him to be back in the hospital, it was necessary.

About two and a half hours later, Susanne was headed back out to the parking garage. The pre-operative care team felt horrible that Susanne and Paxton were there so long. Susanne made sure that they knew that it was more important to her that they took the necessary time to educate themselves on Paxton and his special needs, than for her to be done by a certain time. She appreciated the thorough job that they did and understood completely what it was like to try to juggle numerous patients at a time. It was difficult to be in multiple places at once, especially when they were needed in allof them. Patience was key. Luckily, Susanne had a lot of that.

Susanne thought she was well on her way home until she realized she had made a wrong turn. She couldn't believe it. Despite having a GPS, it was difficult to always determine which turn out of the five options it really wanted you to take. It also didn't matter how many times she had driven into DC, she always seemed to get lost. She was hoping one day she would be able to master navigating through the city. That would be a proud moment for her.

Susanne decided to get her oil changed before she made it all the way home since it was well past due. Paxton was crying by the time she got there because he was overheated even though the air conditioning was on high. It was actually a nice break for him to be able to get out of his car seat for a little while. As Susanne was checking out, the gentleman behind the cash register asked her, "What's wrong with your kids face?" She couldn't believe her ears. How insensitive could someone be? She responded politely back that nothing was wrong with his face. She informed him that he just couldn't eat anything by mouth because of other underlying medical issues and this was how he got his nutrition. What she really wanted to say was, "Nothing is wrong with his face, but there is about to be something wrong with yours!" Susanne shouldn't be surprised anymore with the lack of common sense and lack of respect that people have these days. In the recent past, she had a similar situation where a cashier asked her how old Paxton was. When she told him, he responded, "Well, isn't he a little small?" It wouldn't have been so offensive if his tone didn't sound like he was questioning whether or not I fed the poor baby. He obviously saw the NG tube so he should have put two and two together and thought maybe there was a reason he wasn't at his ideal weight for his age. It was also still so fresh in her mind, the dirty looks she received when she first took Paxton out in public as a four month old. People acted as if she was commiting a crime. Most people thought that he had to be less than a week old and Susanne was exposing him to the world's germs. Susanne wished people would get a clue. It would be nice if people could celebrate what makes other people different and unique. Wouldn't life be boring if we were all the same?

Susanne was able to move Paxton's occupational therapy appointment for later in the afternoon. She did this in hopes that he could try to recuperate from the morning before being asked to do more work. Paxton did well during the session, but he was still not interested in suckling on pretty much anything. Susanne was really hoping that the G-tube would make all the difference.