Paxton had a rough night last night. He woke up a couple of times sounding congested. Scott and Susanne could tell that he needed to clear his nose and throat, but he just didn't know how. Since he couldn't swallow, it complicated things. Thankfully, Scott was available to tend to Paxton when he woke up crying when Susanne was in the shower. It was such a relief to her to have a second pair of hands for once.
Scott ended up having to comfort Paxton into the wee hours of the morning. He was having difficulty breathing since he had an excessive accumulation of saliva and mucus present. Scott and Susanne didn't think he had a cold, but they did think his body was trying to fight off all of the germs he had been exposed to within the last week. Scott had just recovered from the flu and Gigi was currently recovering from a head cold. Hopefully, Paxton would be strong enough to avoid getting sick.
Susanne managed to get in bed a little past 1:00am. She needed all of the sleep she could get because she had to get on the road before 8:00am in order to make it ro Virginia in time to Paxton's appointmens. Her alarm went off sooner than she would have liked. It almost felt like the moment she closed her eyes, it was time to open them again. She needed at least two hours to get everything ready to go. She waited to wake up Paxton until the very last minute possible. She knew that he didn't get a lot of sleep last night so she hesitated to wake him up sooner than she needed to. When she had no choice, she was prepared for a rough awakening and boy was she right. He woke up gagging and vomiting. He still sounded like he had a lot in his throat that needed to be cleared. Susanne had mistakenly forgotten his nasal aspirator back in Virginia. She would never make that mistake again.
Susanne got in the car in the nick of time. She would be pushing it to make it to the house in Virginia by 2:00pm. During the first ten minutes of the drive, Paxton would gag on and off. He occasionally sneezed and even vomited up his stomach contents a couple of times. She was able to wipe his face and clear his mouth out at every stop sign on the way out of the neighborhood. He eventually seemed to settle down and Susanne didn't have to pull over. Susanne struggled to keep her eyes open especially during the first two hours of the drive. It wasn't until she talked to Moppy for about an hour that she felt more awake. Later in the drive, she talked to Scott. It helped to have something that stimulated her brain because the drive itself was so mundane. During the remainder of the drive, she listened to the Harry Potter book on CD that she had started on a previous drive. It helped to keep her focused on something other than how much longer she had to go.
Paxton got upset one more time during the trip. It was all related to his congestion and not the typical problem of him being overheated. Susanne had figured out the solution to that problem a while ago. She would still line the back of his car seat with freezer packs for the drive. So far, that worked well.
Susanne arrived home with fifteen minutes to spare. This was just enough time to get Paxton in the house and changed before his therapy session. Susanne decided to leave everything in the car until after his second appointment due to the lack of time. She would also have to postpone pumping for the same reason.
Therapy went well today. Paxton was very active in the beginning, but eventually lost steam as the session came to an end. He was very talkative and laughed a lot when the therapist first interacted with him. Paxton learned a new trick on his side today. He was allowed to play in the side lying position, but he was required to put weight through the arm that was touching the wedge. It was a total GQ pose. He had a short burst of energy on his back when she was working on range of motion of his legs. He sat with good head control for several minutes multiple times. He still required moderate support to his trunk, but that wasn't surprising. He did well during tummy time and he held his head up without prompting on several occasions. He kept trying to pull his hands to his mouth and rest his face on them. The therapist had to continue to correct his positioning. She didn't want him to become a Lazy Bones Jones. Susanne demonstrated the ball exercises that she had been working on with Paxton. This was when Paxton decided it was nap time. He could no longer keep his eyes open no matter how hard he tried. He was out for the count.
Unfortunately for Paxton, he wasn't going to be able to take an official nap. He had another appointment that was scheduled right after his therapy session. Susanne had just enough time to put him in his car seat and grab her purse before it was time to leave.
Paxton weighed 17lbs 12oz and measured 28.75 inches in height. Susanne was told that even though his car seat was supposed to go up to 22lbs, she would probably need to get a convertible car seat soon. Paxton's height was at the high end of the range for what the car seat would hold. This came as a surprise to them both. The pediatrician did inform her that Paxton had managed to slowly move up from the less than 5% group to the 25% group for his height. His weight was still hanging below the 5% line, but she thought he hid it well. The appointment started with the nurse giving him his Hepatitis B vaccine and his next Synagis vaccine. Once again, even though he was getting only two vaccinations, he had to get three separate injections. He didn't cry for the first two, but the third one brought tears to his eyes. This always made Susanne so sad. Susanne updated the pediatrician about the upcoming cleft palate repair scheduled for 02-15-11. She was pleased with the assessments from the cardiologist and the neuro-ophthalmologist. She was eagerly awaiting what the gastroenterologist was going to say about the requirements for the long term care of Paxton's G tube, but she would have to be patient because Susanne was having trouble getting an appointment with them. Susanne asked her about Paxton's recent congestion. The doctor did not think he had a cold. She thought his lungs sounded clear and the upper respiratory sounds went away after suctioned out with the nasal aspirator. Their last topic of discussion was his feedings. She helped Susanne figure out a way for her to feed him five bolus feedings during the day, but then set him up on a continuous feeding from 11:00pm - 7:00am. She was reluctant to switch anything regarding his feedings. She felt like everytime she adjusted something, he responded negatively and in turn got ill. Susanne was going to have to make this transition very, very slowly.
By the time Susanne got out of there, it was already 5:00pm. The appointment lasted an hour and a half. This was typical for his routine visits so it was not surprising. They always had so much to discuss including all of the updates that had occurred since the previous visit. Susanne was just so thankful that Dr. Lynn was so dedicated to her and Paxton.
Susanne immediately started shoveling snow out of the driveway when she got home. She was trying to beat the sun going down. Her goal was to be able to get into the garage so that she wouldn't risk slipping in the snow with Paxton in tow and to make unloading the car a lot easier. She quickly realized that it was going to take a lot longer than she thought. It had snowed eight inches yesterday. Susanne knew it wouldn't be an easy task. She managed to shovel the first quarter of the driveway before she needed to get Paxton inside for his next feeding. He had been sitting in the heated car while Susanne worked up a sweat. She decided to try to drive the car into the driveway up to the garage. She thought with the path that she had already cleared plus a little momentum, she could get to the garage. SHE WAS WRONG! She got stuck. She could not reverse or drive forward, even with shoveling the snow away that had accumulated around the tires. She eventually threw in the towel and called it quits until tomorrow. She carried Paxton in and got him situated first. Once he was eating and settled, she started to unload the car. It took her EIGHT trips back and forth through the deep snow before she was finished. The most frustrating part was that once it was all inside, she was nowhere close to being able to sit down and relax. She took care of the cats next. Moppy had been unable to get out to the house to scoop litter and refill their bowls because of the snow storm. They still had a little bit of food, but their litter boxes were out of control. She was surprised they were still using them and not going elsewhere. She started a load of laundry and pumped. She talked to her sister, Kerry, about two of her sick dogs.
Just as they were getting off the phone, Paxton woke up crying. He sounded congested again. He was trying to cough up the excess saliva and thick mucus that was trapped in the back of his throat. He had difficulty swallowing it. His cough sounded harsh. Susanne could tell that his throat was dry. She tried everything to help make him feel better. She suctioned out his nose and mouth. She applied Little Noses saline drops to help open up his nasal passages. She offered him a wet oral swab to help moisten his mouth. She even gave him a bath in hopes that it would be calming. The one thing that was missing was a humidifier. She had brought it with her to NC thinking that she would need it down there during the winter months. She had not been taking it back and forth with her. Now, when she really needed it, she didn't have it. Finally, she calmed him down. She snuggled with him for over an hour. She held him closely and rocked him sweetly. He eventually fell asleep.
Finally, she got to eat her dinner that was delivered two hours prior. She had an empty fridge, so this was her only choice if she didn't want an empty stomach. She had been so excited about her meal, but she just had not found a free moment to sit down to eat it. Now she was stuck with a cold dinner. It was all in the name of love.
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