Full Plate and Your Late

Susanne was just about to get in bed for the night when Paxton woke up around 4:00am. Luckily, he settled right down after a diaper change and some soft back rubs. Susanne had to be up soon because she had to get herself and Paxton ready for a full day of appointments. Also, she had to get the car packed for the road trip back to NC today. It was going to be a long one.

Susanne was shocked when she rolled over and saw that the clock read 7:07am. She knew that couldn't be correct. She had set her phone alarm to go off way earlier than that. Unfortunately, it was the real time. Her cell phone never went off. Her phone was doing this weird thing where it would shut off when it was fully charged and then turn on again. It would continue this cycle until she took it off of the charger. The phone must have been in the off mode when the alarm was supposed to wake her up. Now she would have to pray for a small miracle to get out of the house on time.

Somehow she was able to get herself and Paxton ready within twenty minutes. She was out the door in the blink of an eye. As she got into her car, she knew she was about to face another set of challenges. It was the heart of rush hour traffic in Northern Virginia. This was the worst time to be on the road because going somewhere 10 miles away could take up to two hours. She decided to be smarter than the traffic and take a different path than she was used to. She remembered all too well when she used to try to go to work at this time, the back roads were far worse than the main roads. She was cruising along until she approached the stoplight that would get her onto the highway. The line was ridiculously long. She sat there for at least fifteen minutes. It wasn't until she was finally able to turn that she realized there had been an accident on the main road. She knew right then that she had made the wrong choice. If she would have just gone the way she usually went, she would have avoided the extra bump in the road. Either way, she knew she was going to be late.

In knowing this, she called the doctor's office to inform them of her situation. They were very understanding and told her to still come in. She finally arrived and checked Paxton in for his appointment. This took forever because there were a lot of children that were scheduled to be seen. The checking in process sometimes took the longest.

After hanging out in the waiting room for a short bit, they got called back. Paxton got his weight, height, SpO2, and vitals checked. Paxton weighed in at 19lbs 6oz. Susanne was quite pleased. His height was 28.5", which was less than the last time. She was puzzled by this one. She had to blame user error vs. Paxton shrinking in length. His oxygen levels were hanging steady at around 88. This was so much better than prior to his heart surgery. She knew this improvement alone helped him to feel better.

Next they were off to the exam room. It was there that they ended up waiting and waiting and waiting some more. She knew that she was going to have to wait a little longer than usual since she was about thirty minutes late. She did start getting concerned though when she had been in there close to an hour before the doctor came in. She thought for sure that she would be able to make it to a 9:45am appointment for Paxton's cardiology check-up. She would have never thought that his gastroenterology appointment would have lasted longer than 90 minutes. Boy was she wrong! The doctor basically came into the room at the time that Paxton's other appointment was scheduled to start. She had to unwillingly call them to cancel.

The gastroenterologist was lacking in the personality department. Susanne strongly felt like this was an important quality to have as a pediatric doctor. He was also a little snooty for her liking. He spent the entire first ten minutes trying to figure out why Susanne was there in the first place. When she kindly explained the fact that she was referred to him for further instructions on long term G-tube care and for his neverending diaper rash...he seemed baffled. Susanne really got perturbed when she realized that he had not read ANY of the eight page history that was required for parents to fill out before the apointments. He didn't have an understanding of Paxton's medical conditions at all. Susanne had to spend a significant amount of time going through everything that she had already written down. Somewhere in the middle of it all, he got caught up with why Paxton had been seen at multiple different hospitals along the east coast. Susanne explained Paxton's unique circumstances, but that wasn't good enough for him. He continued to inquire. Susanne tried again to explain that Paxton's combination of medical issues was rare. Most medical teams had been comfortable treating their own specialty, but not managing him as a whole. It took months to find someone willing to work with him on feeding. Once that issue was resolved, he required a specific heart surgery that only two surgeons in the entire United States had ever performed. Once that was said, he went into questioning whether or not Susanne had checked into the cardiac surgeons at their hospital. Susanne had to really focus on not giving him a wise answer. Did he not know who he was dealing with? Did he not have the proof in his hands that Susanne had investigated every possible avenue for Paxton?

Finally, he moved on to the exam portion of the appointment. He thought Paxton looked great considering all that he had been through. By the end of the appointment, Susanne had no more information than what she had come there knowing. She received no instructions for G-tube care. She was informed to call a nurse for that. She was told to schedule an appointment with the feeding team for further instructions on managing his feeding issues. She needed to schedule an appointment with a nutritionist to seek information on changes regarding Paxton's nutritional requirements. He requested more testing that had already previously been done, which included bloodwork and a modified barium swallow. Finally, as far as the diaper rash went...he had nothing!!! WHAT? Isn't he the doctor that was supposed to treat everything from the mouth to anus? Wouldn't you think he would have some sort of suggestion? It wasn't until Susanne requested trying a different formula that she got any information on it. Her thought process was that maybe Paxton was sensitive to the current formula because it was a hydrolyzed protein instead of a novel protein. She knew that this could be the case in veterinary medicine for animals that had food allergies so why couldn't it also be true for Paxton. This basically meant that Paxton was eating a formula that had milk and soy protein in it, but they had been broken down into such tiny particles that his immune system wasn't supposed to recognize them as allergens. This was different from a novel protein diet which was a protein that Paxton had never been exposed to before and therefore couldn't have developed an immune response to it. She was glad he finally had something for her to walk out of the door with. This was an easy switch and worth a shot.

She got out of there three hours later. That was way too long of an appoinment to walk out of frustrated and informationless. She knew she would eventually get all of the answers to her questions, but she would just have to talk to five and six different people to get them.

While she was driving out of the parking lot, Paxton's therapist texted Susanne to let her know that she was going to have to cancel Paxton's appointment for today. One of her children had strep throat and she didn't want to put Paxton at risk. She was always glad that she kept Paxton's health in mind.

Since that appoinment was cancelled, she decided to head over to the pharmacy to pick up Paxton's prescriptions that she had called in a couple of days before. She also had a new dose for one of Paxton medications so it was perfect timing. When she arrived, his medications were not ready. They had been having trouble with the insurance situation since it changed again. Susanne knew it was a pain to deal with, but it wasn't her fault that Paxton lost his primary coverage. While she was waiting for the receptionist to get ahold of the insurance company, it was brought to her attention that Paxton's prescription was for a different medication than what he had been on. Susanne was confused because the gastroenterologist didn't mention this to her. He had only said that he was going to increase the current dose of his reflux medicine. Susanne had to spend the next thirty minutes trying to get in touch with the doctor to see if he made a mistake or if he truly wanted to switch the medication. Finally, Susanne got a call back. The doctor claimed he didn't know Paxton was on Protonix even though Susanne had written it down for him and discussed this with him during the appointment. He said that he thought Paxton was on Prevacid. Needless to say, he switched the medication. The carelessness was eminent and Susanne didn't like it one bit.

After waiting for over an hour for Paxton's prescriptions, Susanne and Paxton were finally out of there. It was a good thing that his therapy appointment was cancelled because they wouldn't have made it home in time. Susanne was working against the clock at this point. She needed to get home as quickly as possible because Paxton was off of his feeding schedule. She had only brought enough milk for the first feeding of the day because before she left the house this morning she thought Paxton needed to be back for therapy at 12:00pm. In no way did she think it would have been cancelled or that she would still be gallivanting around. In her race home, she realized that the gas tank was on empty. She was trying to hold out on filling the tank until she could find a Shell gas station in particular. A while back, Scott and Susanne had received a Shell gift card from a friend to try to help with the cost of gas. They knew how much Susanne was traveling back and forth and thought that this would help out. It was a very thoughtful gift that was definitely put to good use. Susanne quickly realized that there wasn't that specific gas station in her vicinity. She got on one of the main highways and hoped for the best. She was no longer seeking out that specific gas station, any one would do. She didn't understand why when you weren't looking for a gas station, they were everywhere, but when you were looking for one, they were nowhere to be found. She was frustrated with herself that she got into the same situation that she had been in months ago. Why had she not learned her lesson? Her tank was on E and the GPS was estimating that she didn't have enough gas to go any further. It read that she had zero miles left before the tank was completely dry. She knew that she still had at least 3 - 4 miles to go before she would come across an exit with any promise. It was by the grace of God that she made it to a gas station. It was $3.74 per gallon, but she didn't care. She only filled the tank with fifteen dollars worth of gas and she would figure the rest out later. She was relieved that this crisis was averted.

They finally arrived home and Paxton was way overtired. He had a busy morning that started out too early. He didn't like to sleep in the car so it always exacerbated the problem. Once he was situated in his crib and set up with his late feeding, Susanne HAD to pump. She didn't have time to do it this morning because her alarm didn't go off and she was running so behind. Afterwards, she felt like she had somewhat caught up with her schedule again. Now she would have to dig deep and keep pushing. She still had a car to pack and a six hour drive ahead of her. She was praying that she would get ahead of rush hour traffic, but it wasn't looking too good. It was going to be a long night.