All By Myself

Paxton was up every three hours last night. He had difficulty getting comfortable and falling asleep despite being given oxycodone. The solution to the problem was Susanne holding him in her arms for hours on end. He always seemed to feel right at home in the crease of her arm. They rocked the night away together.

Moppy headed over to the hospital in the morning. She watched all of Susanne's belongings while she took Paxton to get an x-ray of his chest. Since he was a patient that was in the hospital, they got in and out of there. Susanne had to constantly request the appropriate amount of personal protective equipment for herself during the x-rays. It was amazing how they didn't follow the same standards of care that was required in veterinary medicine. As long as Susanne could remember, she had never been offered anything more than the lead apron. In reality, she should also have a thyroid shield and lead gloves. She felt bad for all of those parents who routinely assisted with their child getting radiographs taken that had not been properly educated on what really happened when one was being taken. Radiation accumulates over time and if their child needed as many radiographs as Paxton had in his lifetime thus far...there was enough room for concern.

Paxton had a consult with a neurologist today. The doctor wanted to assess him so that the neurology team could put the clinical picture together and try to interpret the brain MRI results from a couple of weeks ago. After they had time to put all of the information together, they reiterated their concern for an underlying genetic problem. They were aware that all of the previous genetics tests had come back within normal limits, but they were almost certain that there was something that had caused both the Pierre Robin Sequence and Ebstein's Anomaly to occur simultaneously...they just couldn't put their finger on it. The likelihood that two rare conditions were isolated events was difficult for them to believe. They could not think of any other diagnostic test to run to try to determine what the cause might be. They even mentioned that it might be a genetic problem that hadn't been discovered yet. So it wasn't too far fetched to think that there may actually be something called Paxton syndrome in the future. Needless to say, the results from the brain MRI revealed that he had thinning of the tissue that connects the right and left side of the brain which allows them to communicate and coordinate together. Also, there was a marked loss of white matter, which was one of the tissues that compose the central nervous system that was responsible for the communication between the grey matter regions of the brain and the rest of the body. They even noticed evidence of previous hemorrhage. The thought was that this may have occurred during his previous heart surgery when he was one month old, but they couldn't confirm it. All in all, they did not know what these results would mean for his future. They could not confirm whether he would have developmental issues as an adult or if he would be able to catch up at some point. It was so frustrating that there were still so many unanswered questions whether it had to do with his brain, his heart, or even whether he had a genetic disorder or not.

Moppy got to hold Paxton one more time before she had to head over to the airport. Her flight was later that evening, which was nice becaue she got to visit with Paxton all day. After today, Susanne would be all by herself until Paxton was discharged. Everyone would be missed greatly.

Moving On to Bigger and Better Things

Yay! Paxton was moving to a new room today. Susanne and Moppy made a breakfast to go so that they could get to the hospital as soon as possible. Paxton had a pretty uneventful night, but he was still battling occasional episodes of discomfort. All of the nurses made sure to monitor him closely. If there were any signs that he was in pain, they would give him medication that would provide some relief.

Since being switched from intravenous nutrition over to continuous feedings of breast milk through his G tube, Paxton seemed to be uncomfortable. He was experiencing something called ileus, which was a disruption and slowing down in the normal movement of the gastrointestinal tract. The decrease in motility caused him to digest his food less quickly, which resulted in him having some difficulty passing stool. He had a very serious, concerned look on his face and he would actually grunt as he tried. He really seemed to have to focus on the task at hand. These were all new behaviors that Susanne had never seen before. It was all quite funny to witness.

Moppy bought Paxton two new books to read. He immediately fell in love with one called "Sheep in a Jeep". He loved the pictures and thought the story was so silly. He was very engaged the entire time. He couldn't get enough of it.

Paxton had difficulty getting comfortable. It was hard to know exactly what was causing the main problem. He was irritable and needed a lot of consoling. Thankfully, he had awesome nurses. They didn't give up until they solved the problem.

Moppy and Susanne decided to bring over all of Susanne's belongings from the Devon Nicole House to the hospital. Now that he was out of the CICU, she wanted to stay with Paxton in his room. It was such a relief that she would be able to get back to more of their normal routine. She would be able to hold him when she wanted, change his diaper if it needed to be done, and most importantly, comfort him the way he knew so well when he cried. The freedoms that came along with moving out of the intensive care unit were always a sign that things were heading in the right direction. It was one step closer to being able to go home. Susanne made sure to make up all of the lost time that had occurred over the last few days. Paxton didn't seem to oppose. It looked like they were back to being peas and carrots.

Safe In Mommy's Arms Again

Moppy and Susanne headed over to see Paxton early in the morning so that they could be present for the wire study that he was having done. Before the doctors would even consider taking out Paxton's pacing wires, they wanted to make sure that his heart could handle functioning under normal conditions without them. The doctor came in and used the external pacemaker to increase Paxton's heart rate. At first it was to a level that it would usually be at without any medications on board. Then, he increased the heart rate to a level that one might see if Paxton was under stress. Thankfully, his heart handled the increased rate and the doctor was unable to induce any abnormal rhythms. This gave them enough evidence that Paxton was stable enough to move to the intermediate care unit. This was exciting news. All of the doctors, especially Paxton's primary cardiologist and his surgeon, were beyond shocked with how well he was recovering. They could tell that he was a strong boy with a killer instinct to fight.

Susanne was dying to hold Paxton. She had given up her opportunity to hold him yesterday so that everyone that was heading home could get a chance to snuggle with him before they left. It took everything in her to wait as long as she had. Finally, her time came. The nurse set her up in a rocking chair and handed him over. She loved talking to him, holding his hand, rocking him to sleep, but most of all kissing his sweet face. There was nothing more perfect in the world than holding her baby boy in her arms.

Later in the day, Moppy got to hold Paxton as well. She sang him all of his favorite lullabies. He would usually fall right asleep in her arms, but he just couldn't get comfortable. She ended up putting him back in his bed to see if she could get him to settle some.

The nurse informed Susanne that the milk supply that she had brought with her from home was running low. Paxton had been recently started on continuous feedings and the milk was going like hot cakes. Susanne knew that she would have to increase the frequency of how often she was pumping to try to keep up. Supply and demand baby!

All day, Moppy and Susanne kept missing the cut off for the cafeteria. They ended up eating dinner at Au Bon Pain, which was the Boston version of Panera Bread. They are really everywhere across the United States, but it just seemed to be overrepresented in this area. They decided to build their own salad, which was surprisingly delightful.

After dinner, they wanted to spend a little more time with Paxton before they headed back to the Devon Nicole House to do some laundry. Susanne got to hold him one last time before he went down for the night. It was such a relief that Paxton had the same handful of nurses for the most part throughout his time in the cardiac ICU. This definitely made it a lot better for everyone. It was nice that Susanne was starting to get to know them personally and gaining their trust. The nurses were also able to give him better quality of care because they were already well informed about his medical history and the tentative plan of action.

Sad Goodbyes

Scott and Susanne had a wonderful night together. It was so nice of Moppy to let them stay in her hotel room while she stayed with Poppy and Gigi at the Devon Nicole House. It definitely gave them time for some closure and much needed quality time. They were able to snuggle and watch a couple of movies before they passed out for the evening.

After they finished getting ready for the day, they headed over to the Devon Nicole House to meet up with the grandparents. When they arrived, breakfast was waiting for them and everyone was pretty much ready to go. They were all anxious to get over to the hospital because they knew that Paxton would be extubated today. This was exciting and scary all at the same time.

Within the first hour that they were at the hospital, the doctors gave permission to remove Paxton's endotracheal tube. They felt comfortable with this decision because he had been breathing well on his own overnight when they would back down on the ventilator. Susanne and Scott were allowed to be present for the extubation process. Scott was even given permission to videotape it. Paxton did extremely well throughout the whole thing. He definitely seemed relieved to have the endotracheal tube out of there. Thankfully, he did not have any complications after it was removed. Paxton received oxygen through a mask that was placed around his face for about an hour afterwards. He tolerated it well.

Paxton's nurse during the day decided to be super sweet and break the visiting rules of the cardiac ICU. She allowed all of the grandparents to be in his room with him at the same time that Scott and Susanne were in. Usually, only two people at a time were allowed to visit with Paxton and one of them had to be a parent. She decided to lift the restriction because she knew that Scott, Gigi, and Poppy had to leave today. This was very special.

Since Paxton was doing so well after he was extubated, the nurse felt comfortable enough to let Scott hold him for the first time since surgery. The most important thing to remember was the appropriate way to pick Paxton up and hold him. It was critical to take this seriously because it could cause him major discomfort, but even worse, destroy the handiwork of the surgeon.

Scott was elated to hold his baby boy. It was such a touching moment to watch Paxton stare at his daddy, but even more so when he reached out to touch his face. After a short while, Gigi and Poppy both had a chance to snuggle with the bug before they had to head out. Susanne was really sad that they all had to leave to go home. It had been so nice to have everyone there especially on the big surgery day. Their love and support was much needed and appreciated. Before they headed out, Gigi and Poppy gave Susanne a necklace with an infinity circle that had the word "FAMILY" written on it. She was instructed to wear it around her neck as a reminder that even if they could not be with her physically, they would always be with her in spirit. This was exactly what she needed to push through their departure. The hardest goodbye for sure was Scott. It seemed to happen all to often that Scott and Susanne had to part ways. They could not wait for the day when they could be with each other endlessly. They did not want to let go of their tight embrace and their sweet gentle farewell kiss was over way too quickly. They could only think of it like removing a band-aid...do it as quick as possible to lessen the pain. Nevertheless, it was a sad moment for all when they drove away in the cab.

After they left, Moppy and Susanne decided to spend more time with Paxton. Even though it was a difficult decision, they decided not to hold him since he had such a busy day. They wanted him to rest up as much as possible to help with his recuperation process.

When they finally decided to head back to the house, it was pretty late. They had not had a chance to have dinner yet, so they were on the look out for something to eat. The cafeteria in the hospital was already closed, so they thought they should check out the food court up the road. Much to their chagrin, every place had closed up shop with the exception of Sbarro, which Susanne could not eat. They were a little disappointed that the food vendors had all put everything away even though they technically had about ten minutes before they were actually supposed to be closed. Susanne's only saving grace was that she had leftovers back at the house.

A Little Faith Goes a Long Way

Paxton grabbed Susanne's finger for the first time last night since his surgery. It warmed her heart to know that even though he didn't have his eyes open, he knew that his parents were there.

Today, Chief had to leave early in the morning to head back home. The rest of the gang went to the hospital to visit with the bug. They did their normal routine of alternating turns with who would sit with Paxton.

Susanne and Scott were excited to see that Paxton was trying to open his eyes a little bit today. He was still heavily sedated and intubated so if he started to look the least bit agitated or too awake, then the nurse would give him more medication. Susanne and Scott could see that he was more uncomfortable. This was probably because the amount of pain medications he was being given was being adjusted so that he could start the process of slowly waking up by the time the doctors were ready to wean him off of the ventilator. It was so difficult to see him get out of sorts, especially since they could not hold him to comfort him.

Scott always reminded Susanne of a story he once heard in reference to suffering. In the story, a bear was minding his own business walking in the woods and then out of nowhere he got stuck in a trap. A hunter came along and saw the bear and felt horrible. Out of sympathy, the hunter wanted to attempt to free the bear from his situation. In order to free the bear from the trap, the hunter had to press the bear’s foot deeper into the trap in order to release the tension in the spring. The bear wasn't able to understand why the hunter was causing him more pain. The bear assumed that the hunter was cruel and that he intentionally wanted to hurt him. The bear just couldn’t understand that the hunter was actually trying to help him. He couldn't see past what he was going through in the moment. Suffering, in general, was usually like that. Susanne and Scott discovered that they could even apply this story to their entire journey thus far with Paxton. The thing to remember was that suffering was almost always temporary, although in the moment it felt otherwise. That was where faith came in. Just a little faith would go a long way and eventually the reason for the suffering would reveal itself.

Everyone left the hospital in time for them to go to the grocery store before dinner. Gigi and Poppy had wanted to buy Susanne some food that would tide her over while she stayed in the hospital with Paxton after they left Boston. They were always so thoughtful.

After a successful trip, they all went to dinner. They originally sought out a Mexican restaurant because that was always Susanne and Scott's first choice. The place that they found seemed like a good idea until the waiter couldn't even tell them what a fajita was or what it came with. He was also uncomfortable with Susanne's dietary restrictions and didn't seem confident that he knew what she meant when she requested her meal to be dairy and soy free. They all made the executive decision that it was best to leave and go somewhere else. Luckily, they found a local bar and grill just down the road that was perfect. Susanne ended up getting some dairy and soy free fajitas and they were delicious. Also, Poppy got to try Stella Artois for the first time and even went home with a souvenir beer glass.

Once again, Susanne and Scott made their final visit in with Paxton before heading back to the house for bed. It was confirmed that tomorrow would be the day to try taking him off of the ventilator. They would all be saying some extra prayers before bed.

There's Cause for Celebration

Paxton did well overnight. He was kept unconscious with the assitance of some good medications. The surgeon wanted to make sure that there was no possible way for him to pull out any of the numerous tubes or wires that were attached to him. Even moreso, they did not want him to reach a level of stress that may compromise the delicate surgery that had just been done the day before.

Scott and Susanne visited with Paxton for the better part of the morning. They made sure to bring him all of his lucky charms that they had with them during his surgery. Some were lucky charms that Paxton had with him since his very first surgery such as his Lucky Bear. Others were lucky charms that were given to Paxton from different people specifically for this heart surgery. He received an "angel of heart" pin from Gigi and Poppy. It was to be worn as a reminder that his heart was safe wherever he may go. Thorny gave Paxton a special shark's tooth that she had found on a beach. It was big and beautiful. It symbolized strength and power. She also gave him a necklace that she had found in Central Park that came with a note that indicated that whoever carried it would have a guardian angel watching over them. Lastly, Uncle Loonie gave Paxton a smurf figurine that had personal significance. He wasn't going to tell anyone what the meaning of it was until after Paxton came home. Scott also bought Paxton a new stuffed monkey for his collection. It had what looked like replacement parts for one of his arms, a leg, and his ears. It resembled Paxton somewhat because he had a makeshift heart. Now Paxton's bed was covered in luck.

Only two people were allowed in Paxton's room at a time, one of which had to be either Scott or Susanne. Throughout the day, they alternated with one another and took each of the grandparents to visit with him. Everyone was pleasantly surprised with how good he looked. Susanne had prepped them for the worst. She based her information on what her colleague had told her about her own experience with her child that had the Glenn procedure along with another type of heart procedure previously. This definitely helped them to be better prepared with what the expectation was postoperatively. The most beneficial piece of information that they were given was that Paxton would have severe migraines for a minimum of two weeks after the operation. The reason for this was because the blood that usually came from the head and upper extremities and entered the right side of the heart was rerouted to empty directly into the vessel that would take it immediately to the lungs. As the body tried to adjust to the new pathway for the blood, the patient would get those intolerable headaches. They were even told that despite Paxton being on strong pain medications, he would still be uncomfortable. Thankfully, he seemed peaceful at the moment.

The family was encouraged to get out of the hospital and enjoy the sites of Boston while Paxton was still out of it. Susanne and Scott had previously been to Boston and toured the city in its entirety. They thought that with their limited time the Duck Tour would be the best way for everyone to get the most out of Boston. The last tour was scheduled for 5:00pm. The tour was going to depart near the Prudential Center which was approximately one mile from the hospital. The crew left the hospital with what they thought was plenty of time. It was halfway through the walk that they realized that they would be cutting it pretty close. Scott's Droid indicated that the walk was going to take about 40 minutes. This was unbelievable to them. They all walked briskly to try to make it on time. Susanne even verged on a slow jog at one point. Unfortunately, by the time they made it to the ticket booth, it was too late. It was exactly 5:00pm and they had sold out of tickets. As always, they turned the pile of lemons into lemonade. They decided to take a nice walk through the public gardens and admire the beautiful landscape. They also visited the original pub that the show Cheers was based off of. As the sun set, they headed back to the Prudential Center where they went to the Top of the Hub restaurant on the 52nd floor to enjoy a few cocktails. It was a perfect place to see all of the city lights and the beautiful skyline. They spent a couple of hours reflecting back on the last few days. They were all so proud of Paxton for being so strong. They couldn't believe that the biggest surgery of his life thus far was actually over.

Later, Aunt Leenie's sister, Kathleen, and her boyfriend met up with everybody to help celebrate. Everyone then decided to relocate and grab a bite to eat at a restaurant called Stephanie's. They were well known for serving "sophisticated comfort food". They also had an exectutive chef that had previously won the Food Network's show CHOPPED. This was very exciting for Susanne since she was a Food Network junkie. The food was delicious, but the company was what made the evening so special.

Before heading back to the Devon Nicole House for the night, Scott and Susanne decided to visit with Paxton for a little bit. It was so comforting to see him resting peacefully even if it was because of medication. What an amazing day.

Paxton Finally Gets a Big Boy Heart

Susanne and Scott could not believe that the BIG day was finally here. It had taken the team of doctors so long to even decide what surgery Paxton would be having done. Now there was no turning back. The surgeon had an idea of what he wanted to do, but it would all depend on what Paxton's heart actually looked like once he got in there. Paxton had the most severe form of Ebstein's Anomaly. It was still unknown if he would even be a good candidate for the specific heart surgery known as the cone procedure. If he did end up qualifying for it, Paxton would only be the second child EVER with his type of Ebstein's to get it done. Dr. Del Nido was definitely the man of the hour. It was his time to shine. His masterful hands would hopefully change Paxton's life forever.

Susanne and Scott actually made it to the hospital on time today. They made sure to set three alarms to make sure that what happened yesterday did not happen again this morning. They had to be at the hospital by 7:00am to check in. Moppy and Chief came along for that part of the process. It actually worked in their favor because they were able to spend some extra time with Paxton before he had to head up to the surgery ward. The tentative plan was for the surgery to start somewhere around 8:30am. They knew this would be a long day.

After they checked in, everyone was relocated to the surgery department. Gigi and Poppy met up with them there once Paxton was assigned a bed space. The anesthesiologists stopped by to go over the plan with Scott and Susanne one more time and make sure they did not have any questions. After everyone got to hold Paxton and give him a few words of encouragement, a sedative was given through his G-tube. This made him really sleepy within about ten minutes. Shortly thereafter, Paxton was taken away. Everyone said their goodbyes and off he went. Scott and Susanne had a hard time letting go. They both made sure to hold him extra tight and made sure he knew he was loved. Even though it was painful to hand him over, they knew this was the best decision for Paxton and the appropriate next step in his journey. Nevertheless, they were still scared to death of just the thought of the complexity of the surgery he was about to undergo and the possibility of losing him. All they could do was pray and be hopeful.

After Paxton was out of their sight, everyone was escorted to the family waiting area. They were informed that they would be given updates hourly. This time they did not have a pager with a number to call back to get those reports. Instead, there was a liason between the surgery team and the families who would deliver the updates in person. This sounded better than what they had done in the past for previous surgeries and diagnostic procedures, but it actually made the anxiety level much worse. There were multiple other families waiting in this section of the floor. These families had children that were having surgery as well, but not necessarily heart surgery. Everytime a doctor, nurse, or pretty much anyone that looked official walked by...Scott 's and Susanne 's hearts stopped. They constantly wondered if the person walking by was looking for them to give them news. More times than not, a member from the staff would look in on them and then walk away after realizing they were trying to find someone else. The anticipation and suspense was unbearable.

Susanne had decided to pick a section of the waiting area that had a television because she needed background noise to try to help distract her brain. She remembered all too vividly the first heart surgery when Scott and Susanne were almost driven to the point of insanity with the waiting. Nothing could keep their minds off of Paxton. During the wait, Gigi and Chief took little cat naps, Moppy and Poppy read, but Scott and Susanne were just restless. They couldn't focus on any one thing for too long. The only thing that kept them positive and comforted was the presence of each other.

Time seemed to stand still. It was not going by fast enough. By the time the surgeon made the initial incision, it had been two hours already. What could be taking so long?! Even with Susanne having a deeper understanding of what truly goes on behind the surgery doors, it still felt like it was taking forever. She knew people weren't animals, but she was pretty sure that the set up for surgery had to be comparable. After about another hour and a half later, the surgeon was just getting ready to start the actual open heart surgery. Susanne and Scott appreciated the meticulous nature of the surgeon when it came to gaining access into the chest, but the suspense was unbearable. Right before the surgeon started the procedure, Paxton was placed on a heart and lung bypass machine to externally oxygenate his blood and help keep it flowing through his body while the surgeon worked on his heart. This was the moment Scott and Susanne had to just put their complete trust in God.

After about four hours of actual reconstructive heart surgery, the surgeon was ready to take Paxton off of the bypass machine and see if his heart could function on it's own. This was the moment of truth. Thankfully, all went well. Paxton's new and improved heart was kicking butt so far. Postoperatively, the cardiologist did an ultrasound of Paxton's heart by using a probe that went down his esophagus. This allowed him to get a closer look at how his heart was functioning and to assess how it was handling the changes thus far. The whole cardiology team was more than impressed by what they were able to accomplish. Before surgery, the outlook for what they would be able to do for Paxton was grim. Now, there was more than just a glimmer of hope.

The surgeon ended up doing a multitude of procedures on Paxton's heart.

First, he took down the BT shunt that was placed when Paxton was a month of age, which allowed him to survive up until this point. This procedure was temporarily used to transfer some of the blood going to the body and direct it to the lungs for oxygenation. This was what the cardiology team was waiting for Paxton to outgrow before moving on to the more long term corrective and palliative heart surgery.

Next, they performed the bidirectional Glenn procedure. This was a more permanent type of shunt than what Paxton previously had. In this procedure, the surgeon disconnected the superior vena cava, which was the vessel that carried blood returning from the upper part of the body to the right side of the heart. Then, he redirected its blood flow directly into the pulmonary artery, which takes the blood to the lungs. The inferior vena cava, which was the vessel that carried blood returning from the lower part of the body, was left alone. This portion of blood would still be pushed through the right side of the heart and then out to the lungs through the pulmonary artery to become oxygenated. In essence, this procedure allowed half of the blood to flow through the right side of the heart normally while the other half bypassed the right side of the heart altogether. This was why this procedure was referred to as the one and a half ventricle repair because the left ventricle was functioning normally and doing 100% of its job, but the right ventricle was only doing half of the work of a normal right ventricle.

The third procedure was the most involved. This was called the cone procedure, which had only been performed by three surgeons in the entire world. Dr. Del Nido was one of them. It was the procedure that was specifically designed for people with Ebstein's anomaly. After reviewing Paxton's results from the pre-op tests, the surgeon wasn't sure if he would even be able to perform this surgery on him because his form of Ebstein's was so severe. Basically, the three flaps that were supposed to form Paxton's tricuspid valve never peeled away from the inside lining of the right ventricle during development. As a result, Paxton's right ventircle was small and underdeveloped, whereas the right atrium was enlarged. Due to the lack of a properly functioning valve, Paxton's blood freely flowed back and forth between the two chambers of the right side of the heart. All of these issues combined, prevented any blood from getting to the lungs. This specific surgery was designed to make a functional tricuspid valve using the patient's own tissues. The surgeon's hope was to be able to dissect each individual flap away from the inside wall of the right ventricle. If this was successful, then he would try to suture them together in a way that it would form a cone-like shape. As a result, it would become a functional tricuspid valve. Luckily, his attempts were a success. This was truly amazing given the severity of Paxton's heart condition.

After he tackled the cone procedure, he then decided to remove the portion of the right ventricle that was currently functioning as right atrial tissue. This helped to reduce the heart size greatly.

Lastly, he partially closed the hole that was between the right and left atria, which are the upper chambers of the heart. He left a small portion open to function as a pop off valve to reduce any pressure build up from all of the reconstruction that was done to Paxton's heart.

The end result was miraculous. They were shocked to find that on the postoperative heart ultrasound there was only very mild backflow of the blood through the newly designed tricuspid valve. All in all, Paxton's heart was looking markedly better. Paxton now had a big boy heart.

Later in the evening, everyone was relocated to the waiting room outside of the cardiac intensive care unit. Unfortunately, they had to wait some more before they could see the little guy. The surgeon had talked to them briefly with his assessment. He was beyond pleased with how everything turned out. They were informed that he would be heavily sedated and on a ventilator for the next few days. Trying to wean him off of the ventilator would be the next challenge. All Susanne and Scott cared about at that moment was seeing him. That time finally came and they could finally breathe.

By Popular Demand...

We have received a number of requests from people interested in donating money, rather than or in addition to buying a t-shirt. There is now a button to the right specifically for donating money. Thank you so much to everyone who has already ordered t-shirts. We truly have amazing family and friends who continue to support us and Paxton as he continues to fight.

We're Late, We're Late...For a Very Important Date

Scott and Susanne were supposed to be at the hospital at 7:30am for Paxton to check in for his final day of pre-op tests. Scott had set his alarm the night before for 6:00am so that there would be no question about whether everyone would be able to make it on time for his appointment. Unfortunately, the alarm never went off. Luckily, Susanne's eyes popped open around 7:20am. She woke up because she knew she had been asleep for too long. It was rare that she got more than four to five hours of sleep at a time so she knew something was up. Once her brain registered what time it was, she jumped out of bed in a panic. She then woke up Scott. He was in a state of confusion as well. As he was rushing around to get ready, he was trying to figure out why his alarm did not go off. All he could gather was that when he woke up at 1:00am to turn off Paxton's feeding, he must have accidentally turned off the other alarm he had set for 6:00am as well. It was very difficult to try to get it together when they both had not had enough time to fully wake up yet. Scott managed to be ready to leave before Susanne, so he offered to get a head start to the hospital. Even though it was Scott's first time at Children's Hospital in Boston, he felt confident that he would be able to find the check-in desk at the admitting office with no difficulty. Susanne took him up on this so that she could finish getting ready. To try to help expedite the process, Gigi and Poppy offered to bring over the remainder of Paxton's bags and some breakfast so that Susanne could get over to the hospital as soon as possible. Scott quickly discovered that finding the admitting office proved to be more of a challenge than anticipated. He went up and down elevators, through hallways, and around corners searching for where he was supposed to be. Finally, Scott's cell phone rang. It was Susanne calling from the check-in desk. She had been waiting for them and was wondering where they were. He was clearly lost. She explained to him how to get to where he needed to go. After about another five minutes, they finally showed up. Susanne was relieved. So much for getting a head start...

Their day started similar to last week's day of pre-op tests. They were first sent to radiology for a chest x-ray to evaluate the heart and lungs. Afterwards, they were sent to an exam room so a nurse could get Paxton's height, weight, and vital signs. In addition, they got a current blood pressure, ECG, and oxygen saturation level. Paxton's oxygen saturation level was reading in the mid-seventies. This was a little bit of a concern for the cardiologist, but somewhat to be expected as he continued to outgrow his shunt. The biggest question of the day was whether Paxton should be admitted to the hospital for monitoring overnight or to just be admitted tomorrow morning before the major procedure. Luckily, his oxygen saturation levels looked more stable later in the day and he didn't have to stay.

Throughout the day, they met with each member of Paxton's team of doctors. Scott got to meet the anethesiologist, cardiologist, and cardiac surgeon. He, along with Gigi and Poppy, had the opportunity to ask any questions that they had about the upcoming procedure and post-op care. Everyone felt more at ease after the multiple discussions they had with each of them. Their day was so jammed packed full of appointments that Scott and Susanne didn't even have time to sit down to eat their lunch. They actually had to eat in one of the exam rooms during one of Paxton's appointments.

At the end of the day, a research team met with Scott and Susanne to see if they would be interested in volunteering Paxton for a study on stress hyperglycemia after major surgery and the effects it has on healing time. Of course with their science backgrounds, they supported this because it could help advance medicine in the future. It felt like their own little way to give back to the medical team that had done such an amazing job thus far with Paxton's care.

After they wrapped up for the day, they met up with Chief J and Moppy at the nearby hotel. They all spent some time talking about the expectations for the big surgery day and the state that Paxton would be in afterwards.

They all decided to go out to dinner before turning in for the night. Susanne made sure to let the waitress know about her dietary restrictions before ordering her dinner. She always presented as if she had the true dairy and soy allergy so that they would take it seriously. Surprisingly enough, they still messed up. Even though she had made it clear to the waitress and the chef prior to placing her order about her special needs and the chef picked out the dish that would be safe for her to eat, the chef still served her a dish covered in cheese. Thankfully, Susanne caught it before she took the first bite. Susanne and Scott made sure to express their concerns to the manager because if Susanne truly had an allergy, it could have been a fatal mistake.

Boston Bound: The Sequel

Susanne and Scott spent most of the night trying to get everything packed and ready for their trip to Boston. It was difficult for them to figure out what they would actually need, especially for Susanne who would be there for at least two to three weeks. A lot of the stuff could not be packed until this morning because it needed to be kept cold. Susanne had to try to estimate how much frozen breast milk she would need to bring to keep up with Paxton's demands. She knew from her last trip that this was not an easy estimation.

Chief showed up around 8:00am to pick everyone up to take them to the airport. After Scott and Susanne packed the last few items, they were ready to go. Susanne only had one more thing to do before she walked out of the door... a kitty count. Everytime she left to go anywhere, she always checked to make sure that both cats were accounted for before she walked out the door. She did this because even as astute as she was, both cats had on occasion slipped into a room or a closet without her knowledge. This morning she could not find Chloe. She was the scaredy cat, but Susanne knew all of her favorite hiding places. Unfortunately, she could not find her. She had everyone looking. They looked in the closet, the nursery, the pantry, the garage, under the bed, behind the dresser, and the bathtub. Still no Chloe. After about fifteen minutes of racking their brains, a lightbulb went off in Susanne's head...food. If there was one way to get to Chloe's heart it was through food. She would have to be in dire straits not to come out for food. Susanne had everyone else load up in the car and she pulled out a can of the smelliest cat food she could find. Within seconds, Chloe showed her cute face meowing for the special treat. Susanne still has no idea where she was hiding, but she was relieved that the mystery had been solved. What a silly kitty!

After that whole ordeal, they finally got on the road. Unfortunately, they quickly realized that they were going nowhere fast. First of all, it was raining. Second of all, it was the middle of rush hour in Northern Virginia. Luckily, they got to the airport on time. It was much easier for Susanne to navigate through the airport now that she had extra hands. They had a total of twelve bags to divvy out between four people. Six of them belonged to Paxton along with a car seat and stroller. She set it up so that each person had one of Paxton's bags as a carry-on and some of them even had to double up. He definitely required an entourage!

The flight was only about an hour and a half. This was much better than driving close to nine hours to get to Boston. Paxton did well as always. He got to snuggle with his daddy the whole way there.

Once they landed, they were all looking forward to a blueberry beer from Boston Beer Works. They had heard about this delicous treat through Uncle Looney and they were all very intrigued. Susanne had wanted to try one on her trip up to Boston last week, but thought that people might have frowned upon a single woman with a child sitting at a restaurant having a beer at 7:30 in the morning. This was a much better set up. The beer was extremely delicious. It was so tasty that even Gigi had an entire beer by herself, which was unheard of since she was a wine connoisseur and she didn't like beer.

They caught a taxi to the place that they were staying. Susanne was constantly shocked by the difference in price that each cab driver charged for the SAME drive. It must just be the way of the world.

Once everyone got settled in, Paxton needed to be started on his feeding right away. He always got a little off schedule when they were traveling. In the process of trying to get him back on track, things didn't go so smoothly. The first mistake was hooking him up while he was still in his stroller. The second mistake was trying to move him to his pack and play once it was set up so he could take a nap while he was finishing his feeding. The end result was his line got caught on the stroller in the middle of the transition and his G-tube came out. This was the first time that this had happened since the surgery. Susanne had been prepped that this was bound to happen just like the NG tube, but most of the time it was from the actual patient pulling it out. Susanne had only been verbally told what to do in these situations. She initially panicked, but quickly realized that she had it under control as long as she just relaxed and thought logically. Scott placed his hand over the opening while Susanne got a specific type of tube to place in the hole to keep it patent. Once she secured that, she was able to focus on replacing the MIC-KEY button. She went through a handful of syringes to try to find one that was small enough to fit into the balloon valve to be able to deflate the balloon at the end of the feeding tube. Finally, the appropriate syringe was located. She was able to empty the balloon, guide the MIC-KEY button back into the hole, and refill the balloon to hold it in place. Everyone was in a state of shock. Susanne remembered the first time she had to replace the NG tube, which was scary, but this was way worse. Scott and Susanne felt good about how the button looked after it had been replaced, but they wanted to make sure there had been no damage to the hole and that it looked secure. They weren't expecting to have to go to the hospital today, but with Paxton they knew to always expect the unexpected.

Luckily, they were seen right away. The doctor thought that all looked good. After all was said and done, everyone felt like they could go for another blueberry beer.

Susanne and Scott were hoping that the rest of the evening was uneventful. They did have a BIG week ahead of them and they needed as much fuel as possible to get them through.

Team Paxton Fundraiser

T-shirts are now available for purchase for members of Team Paxton. They were designed to show support for Paxton as he continues to overcome the many challenges he faces and to help ease the financial burden of his ever-growing medical bills. Above is a general idea of the design of the men's and women's shirts. To order, click the PayPal button to the left and choose the size and quantity you would like.
**Orders will be taken until October 24, 2010.
***Heart surgery scheduled for October 6, 2010.

Home Sweet Home!

Susanne was super excited because Paxton got the okay to go home today. The goal was to get him out of there before the 12 o'clock feeding. Susanne had learned from Paxton's previous hospital stays that usually whatever time they estimated, she would need to add a few hours.

Susanne continued to inquire about how to care for Paxton's G tube. The unfortunate thing was that none of the nurses were familiar or comfortable with the type of G tube Paxton received. The day before, Susanne found a couple of videos on G tube care on the television in Paxton's room. She discovered them accidentally when she was trying to nominate one of the overnight nurses for an award for excellent patient care. She was a little upset that she had to find this on her own.

Susanne kept getting the run-around about the discharge time. The time continued to tick away. The 12 o'clock feeding came and went. She had loaded up a cart with all of her belongings earlier in the morning. She managed to take one load of stuff to the car, watch a few shows on the television, and grab a bite to eat. Finally, the nurse was ready to go over the discharge instructions. By the time she was finished, it was time for Paxton's next feeding. Susanne had to wait another hour before she could leave.

The nurse helped Susanne out to the car. She finally got on the road around 4:30pm. They were home free. It felt so good to be out of the hospital. It took them about an hour to get home. By the time they walked in the door, it was time to feed Paxton again. She was greeted with a warm welcome by James. He was so happy to see them. Susanne spent some time unloading the car and trying to weed through it all to find the things she would need to set up Paxton's next feeding. Since he had been having some difficulty with the last few G tube feedings, Susanne had been instructed to feed him over a longer period of time. This was supposed to help get him accustomed to the new set up. So far that seemed to fix the problem.

Once they got back into the swing of things, Susanne tried to get settled back in. She was looking forward to getting some sleep in her own bed. The nutritionist had adjusted Paxton's schedule so that he could be set up for a feeding that would be administered over 10 hours. This gave Susanne high hopes for an evening of rest. Once she started thinking about the length of time that the bag of breast milk would be hanging up, she thought something didn't seem right. It grossed her out to think about the bag hanging up for 10 hours without being refrigerated. She decided that she would give half of the feeding and then exchange it out for the other half mid-way through until she could check with someone about the safety of the milk being out that long.

She did not miss getting up at 3:00am at all. She resisted getting up when his pump beeped. She somehow mustered up the energy to refill the bag. She quickly realized how physically exhausted she was as well as emotionally exhausted. She continued to wonder where she got the strength to push through.

Therapy...of the Canine Variety

Paxton slept much better last night. His nurse was phenomenal and was really in tune with his needs. She made sure to give Paxton pain medication on a set schedule per Susanne's request instead of on an as needed basis. This seemed to make all the difference in the world. He was able to settle down a lot more easily. Susanne liked the concept that his pain would be consistently controlled instead of waiting until he was showing clinical signs that he was in pain. He was febrile starting the previous night. His temperature had gone up to 101.8 at one point. Nothing was helping. The nurse decided to wash him with cool water and place a cold wash cloth on his forehead. This really calmed him down. Susanne held him a lot and stroked his hair. Once he finally fell asleep, he was down for a while.

This morning, Susanne was up bright and early to take care of Paxton. He had started having bowel movements again once he was transitioned back over to breast milk.

Susanne immediately noticed that Paxton appeared to be much more content than yesterday. He actually smiled at her when he woke up. She was impressed that Paxton had not had any gagging or vomiting episodes the last two mornings which was unheard of in her world. The hope that it would go away once the NG tube was removed had thus far been holding true. Paxton was able to fall back asleep with little effort today. The only problem was that every time he would doze off someone came into his room to mess with him. The first set of rounds started early in the morning. Susanne kept trying to find an appropriate time to pump. At one point she thought that everyone had a stopped by Paxton's bedside that needed to assess him. She was probably pumping a total of five minutes when the entire team from cardiology stopped by to discuss his case. She couldn't win.

In a matter of a few hours, Susanne had managed to talk with the cardiology team, surgery team, ENT team, nursing staff, nursing students, residents, fellows, attendings, case manager, and social worker. It was overwhelming how many people were needed to look after Paxton. Susanne knew that he was in the best hands.

Later, the staff presented a symbolic bead necklace to Paxton. It was from an organization called Beads of Courage, which is a unique program for children coping with serious illness. Paxton received a different bead for each night he had spent in the hospital, for each procedure he had done, for every major diagnostic test that was performed, and for every catheter he had placed. They also honored his past hospital stays by giving him a special bead that symbolized those portions of his journey. Susanne also received a bead. Hers was the courage bead that represented the courage that it had taken her to get through each day thus far. She was so touched by the gesture. She would definitely wear it with pride.

Susanne saw that the therapy dogs would be visiting Paxton's ward this afternoon. She got special permission to disconnect Paxton and walk him down to the room where they would be. The nursing student brought a red wagon for Paxton to be transported in. He thoroughly enjoyed the ride. He was smiling and laughing the entire way. He loved meeting the dogs. The oldest pup of the bunch came right over and rested his head on the side of the wagon. At the end of the visit, one of the dogs performed an entire choreographed routine with his trainer. It was very entertaining.

Before Paxton was reconnected back= to all of his machines, Susanne gave him a bath. She could only give him a sponge bath just like the old days. It was more difficult than she had remembered. It was interesting trying to avoid his surgical sites.

Moppy stopped by for a short visit. She was on top of making sure that Susanne didn't starve to death. This was the only hospital that Paxton had been in thus far that didn't provide a meal for one of the parents when their child was inpatient. They also locked down the nourishment center where Susanne usually refilled her water. They had recently had problems with parents stealing formula. Susanne was constantly shocked at the quality of people that roamed the earth.

Colleen and Chris were able to stop by before the visiting hours were over. Once they were going to get kicked out, they somehow convinced Susanne to leave the hospital to get away for a few hours and enjoy a nice dinner. They ended up going to a pizza place called RedRocks in D.C. They were well known for their firebrick oven pizzas. Chris had done the appropriate research prior to selecting this restaurant and found out that they actually had some options for Susanne. They actually served pizza without cheese and it was delicious. Go figure.

When Susanne returned back from dinner, she was told that Paxton's abdomen was really distended and he seemed uncomfortable. The nurse showed Susanne how to vent his stomach to relieve it of any excessive gas. He immediately felt better and within minutes had a smile on his face. Susanne also noted that Paxton had a catheter in a different place then before she had left for dinner. The nurse let her know that the previous catheter stopped working when they tried to give him his last dose of intravenous medication. They replaced it while she was away. Susanne was a little sad. She would have preferred to have been there to help distract Paxton. They had a system that seemed to work. She was usually able to prevent him from crying. She was bummed at the thought of him wailing through the catheter placement. The only thing that kept her from crying was the knowledge that he wouldn't remember any of it a day from now.

Ouchy Ears

Paxton did relatively well overnight. He woke up every three hours crying in pain. The nurse did an amazing job with addressing his discomfort immediately. After some comforting words and a loving touch from his mother, he would fall back asleep. The biggest scare all night was when Susanne woke up to comfort him at 3:00am and his right ear was covered in blood. It was alarming! The nurse contacted the overnight doctor to double check that this was a typical side effect from the ear tube placement. The doctor at that time told her to rest easy. They planned on just monitoring him closely for any further evidence of complications. She tried to until she was woken up at 5:00am by the radiology technician so he could take x-rays of Paxton's abdomen. Susanne had to gown up so that it would minimize her risk of exposure to the radiation. She was able to shut her eyes for a short time more before she needed to be up at 7:00am for morning rounds with the first set of Paxton's doctors. Any hope of her catching up on some much needed sleep had disappeared.

Chief stopped by before work to say good morning to the little guy. He also dropped off his iPad so Susanne could have access to the Internet and music. This was awesome since Susanne still couldn't hold Paxton and there was no form of entertainment available in his CICU room.

Multiple doctors stopped by Paxton's bedside to examine him and reassess his status. Everyone thought that he was looking stable and he could quite possibly be transferred to the Heart and Kidney Unit (HKU) later today. While Paxton rested, Susanne went in search of some breakfast. Luckily, she had brought an apple because there was nothing available on this floor that didn't have dairy or soy in it. While she was in the family waiting area, she saw a family from yesterday with a son who had his tonsils taken out. Susanne said hello and was pleased to hear that he would be discharged today. During their conversation, she noticed the obnoxious father from yesterday trying to be friendly with her son. She was disgusted with how fake he was being especially since his true colors had already been revealed.

Paxton finally got approval to be transferred to the HKU around lunch time. They had Susanne move over first. They assisted her with her belongings. It sure looked like she was moving in. They informed her that Paxton would be following her shortly. One hour later, he finally made it. Susanne was wishing they would have told her that it would have taken that long because she would have loved to sit with him.

It didn't take long for them to settle in. Paxton slept most of the afternoon while Susanne watched over him. Later in the day, Paxton had visitors. Moppy stopped by to visit and brought Susanne a late lunch, which turned into an early dinner. They enjoyed doting on Paxton and trying different things to try to keep him entertained. He was still not completely back to himself and they could tell that he was still uncomfortable.

Luckily, the overnight nurse seemed very invested in Paxton's comfort and well being. Susanne would have to wait to see what the evening would bring.

Surgery Gone Wild: Part One

Susanne got a total of two hours of sleep last night. She was anxious about the day ahead of her. Paxton needed to be at Children's National Medical Center by 5:45am to check-in. In order to accomplish this, they needed to leave with time to spare. As always, this did not happen. Luckily, they arrived right on time. There were two other families ahead of them at the registration counter. The first mother was not prepared. She didn't know what her child was having done, what the doctor's name was that was doing her child's surgery, or where she was supposed to go. The gentleman informed her that she should have received a phone call the night before with all of that information. He only had minimal access to patients' information. She was not so pleasant and really didn't set an appropriate tone for the morning.

After signing in and filling out the appropriate paperwork, the waiting began. They hurried up to get there to just wait. Waiting, waiting, waiting. Finally, they were called back. Paxton's vital signs were taken. Both surgeon's and the anesthesiologist stopped by to review the plan for the morning. Once everything was confirmed, Susanne had to put Paxton in a hospital gown. It was the cutest thing she had ever seen. Susanne asked if she could walk Paxton back to the operating room just as she had done in the past. The anesthesiologist responded that they only allow the parents to do this when the child is at an age to care. This struck a nerve with her. She wanted to think that Paxton already cared that she was by his side and that he knew she was there. If this was too far fetched, then at least let her go for her sake.

Susanne was informed that Paxton would be under anesthesia for about two and a half hours. She was encouraged to go to the cafeteria to try to relax and eat some breakfast. Susanne was wishing that the waiting room wasn't so strict with their rules. She couldn't think of any other waiting room where you couldn't eat food, drink, talk on your cell phone, access the internet...etc. It was just ridiculous. Susanne and Moppy decided that they should probably go get a bite to eat. Just as Susanne was ordering her breakfast, the pager went off. Susanne started to panic. She set down the drink she picked up and started a slow jog...okay full-on-run... back to the waiting room. On the way, she was hoping that it was just an update. It just seemed too soon after Paxton was taken back for them to already be finished with any of the procedures. Low and behold, that was what it was. The ear tube placement was completed. Phew! Susanne headed back to the cafeteria to reclaim her breakfast.

At the end of breakfast, Susanne noticed that her cell phone indicated that she had a missed call. This was confusing because she knew that her phone had not rung. She immediately listened to the message. It was from the receptionist in the surgery waiting room. How could this be? The cell phone service in the hospital was mediocre. This was not the time or place for this to be happening. After listening to the message, Susanne realized that she had missed the surgery nurse that had come out to the waiting room to give them an update. Seriously?!

Moppy and Susanne decided that they would not leave the waiting room again. They wanted to be available for the next update. Susanne realized that she needed to pump. She was escorted to an empty hospital room where she was set up. The whole time she worried that the surgeon would come out to the waiting room to give an update. Luckily, she didn't miss a thing.

Shortly thereafter, the surgeon came out to inform Susanne that all of the procedures went well. Paxton was in the process of being extubated. After they were finished, he would be taken to the recovery room where Susanne would finally be able to hold him again. She couldn't wait to see him.

Always One Step Behind

This morning, Susanne felt like she was always one step behind. She purposely got up early so that she would have enough time to get ready and take care of Paxton with plenty of time to spare. This didn't work out as planned. She was starting to wonder how other people knew how much time to plan for when needing to be somewhere by a certain time. It never failed that on those mornings in particular, Paxton would need extra attention in some regard. He would either have multiple gagging episodes where Susanne would have to hold him and soothe him until he calmed done or he would have a neverending dirty diaper run. She was obviously late. She made sure to call the office so that they would know she was on her way. She offered for them to reschedule, but they didn't think it was necessary. She felt horrible, especially because she knew what the aftermath was when her own clients showed up late to their appointments. Most people probably didn't realize that it could sometimes throw the entire schedule out of whack, therefore causing the doctor to run behind the entire day.
Today just when she started feeling like she was making head way, Susanne ran into another problem. There was major construction taking place on the main road that she was traveling on. When she finally arrived at Paxton's doctors' office, she noticed that there was one parking spot available. It was a risky spot because the bumper of the car was right near a fire hydrant. At this point, Susanne was willing to risk it. Luckily, as she was walking away from her car, the gentleman that had parked in front of her was leaving and suggested that she take his spot. So she did just that. The check-in process took forever. Susanne was thankful when they finally made it to the waiting room. She apologized profusely when they were called back.

Paxton had an appointment with the otolaryngologist, also known as an ENT, who would be surgically placing his bilateral myringotomy tubes, or more commonly known as ear tubes. The nurse that initiated the appointment got a medical history on Paxton. She was dumbfounded to say the least. When she heard that Paxton would be headed up to Boston for his reconstructive heart surgery, she questioned that decision. She proceeded to go into a long explanation as to why she felt that Paxton should come to Children's National Medical Center for his upcoming procedure. She was trying to be helpful, but ended up sticking her nose where it didn't belong. Susanne had to politely inform her that the procedure that Paxton would require could only be performed by either the cardiac surgeon at Children's Hospital at Boston or by a cardiac surgeon at the Mayo Clinic in Minnesota. She proceeded to try to convince her that the cardiac surgeion at their hospital could probably do the surgery because he trained at Boston. The ENT, who also trained at Boston, gave Susanne a handout on the cardiac surgeon that worked at the hospital and put in his two cents on the situation. Susanne decided to just nod and smile, but secretly tune him out.

Paxton was examined by the ENT. He confirmed the presence of fluid in Paxton's middle ear. He did a thorough job of explaining the procedure Paxton would have performed. He even showed her the tubes that would be inserted into his ear canal. Susanne was a visual learner so this really helped her to understand the surgery much better.

Susanne finally finished up with the appointment and headed home. Paxton had a therapy session scheduled for the afternoon. Unfortunately, the traffic that she encountered on her way caused her to show up to the house right when the session should have started. She knew that this would not be a good set-up for Paxton, but they gave it a valiant effort.

Paxton was overly sensitive today. He would cry anytime Susanne or his therapist tried to work in or around his mouth. He fought with them tooth and nail. The funny thing was that when Susanne would give him a break, she could immediately get him to smile. The easiest way to do this was to tell Paxton that he was, "SO BIG" while raising his arms up over his head as if he was calling a touchdown. He even laughed a few times. They started to wonder if Paxton was pulling one over on them.

After therapy, Susanne wanted to relax, but there was too much to do. She needed to put Paxton down for a nap, give him medication, set up his next feeding, take care of the animals' needs, make herself something for lunch, and pump. By the time she was finished, it was evening.

Susanne decided that instead of sitting down in front of the television, she would try to tie up some loose ends. Her main goal of the evening was to finish two reference letters that she had been asked to write for two of the technicians that she worked with. They were trying to get into veterinary school and requested that she be one of the veterinarians that evaluated them. She felt honored to do so.

Game Over

Susanne's morning started way too early...wait, her mornings always start way too early. Today, however, she truly felt like she had no energy to get things done. Her exhaustion took control of her and kept her in a zombie-like state. In between Paxton's feedings and disguised therapy, she would zone out. She was hoping to get a lot more accomplished with her Thursday, but that didn't look like it was going to happen.

Susanne did manage to make a few important phone calls throughout the day. She could only handle so many before her stress meter skyrocketed. The best news she received all day was that her health insurance company finally admitted that they had processed two of her claims incorrectly and the bills would be paid in full by them. It only took talking to fifteen people including a resolution specialist, writing two letters of appeal, and contacting the bureau of insurance for them to realize that it was their mistake. Susanne put up a good fight. She never backed down. She stood up for what was right. Finally, seven months later, all of that hardwork had paid off. Hallelujah...praise Jesus!

Susanne was noticing that everytime she had to try to start a feeding through Paxton's NG tube or give him a medication while he was sleeping, it was becoming like the game, "Operation". She would ever-so-gently and quietly reach for his NG tube. The goal was to not wake Paxton up in the process. Sometimes he would start to stir with the lightest touch of his tube. She would think that she had lost the round, but he would surprise her and never wake up completely. Occasionally, she could shimmy and shake all she wanted to and Paxton wouldn't budge. Other times, it only took the slighest movement to wake him and Susanne would be instantly greeted with his big, beautiful, brown eyes. He would stare at her so intently as if to say, "You're busted...GAME OVER!"

Still Standing

still standing, gagging, up early, work, stayed late, home @12am, spit up throughout the day, hates nuk brush, holding head up extra long

Susanne was starting to feel the effects of months of sleep deprivation, emotional exhaustion, and physical exhaustion. This cocktail was not a mixture she ever wanted to order again. It was amazing to her that she could still put her mind to pushing through the day and she always made it through.

Paxton woke his mommy up early in the morning with a gagging fit. She comforted him until he recovered. This time it seemed to take well over thirty minutes for him to completely settle. She was now running behind for work. In a perfect world, she should allot an additional hour for set backs. This was, of course, good in theory, but never even an option with the kind of schedule they already had.

Susanne was so excited when Moppy arrived to watch Paxton for the day. She was always such a tremendous help and made it easier for Susanne to get ready for work.

Moppy noticed that Paxton was spitting up a lot more during the daytime today. He seemed extra sensitive and he was definitely not interested in any oral motor therapy. He was not welcoming the Nuk brush with open arms and he made sure she knew it. He did seem to excel at holding his head up extra long. It was so nice to see his sweet baby face.

Susanne didn't get home until close to midnight. Susanne was informed that Paxton had been fighting to fall asleep for a few hours. Moppy was having a hard time getting Paxton to settle so Susanne gave it a try. Once her angel was off to sleep, she decided to unwind and get some much needed shut eye herself. It was a small miracle that she was still standing.

All Better

Paxton had a therapy appointment bright and early this morning. It was always hit or miss whether he would have a successful session. Sometimes he would be asleep right up until the time of the appointment. Other times, he would be up for an hour before the session started and be over-tired the entire time. Occasionally, the timing would be perfect.

Paxton was doing an excellent job with lifting his head and holding it up for over twenty seconds at a time. He did this multiple times during the therapy session. His newest trick was being able to put some weight through his arms to give him additional support when trying to lift his head.

Shortly after the session, Susanne tried to get a few things done around the house before they had to head out for his next appointment. Paxton was scheduled to get a flu vaccine today. Susanne wasn't sure if his pediatrician would actually give it to him because of his recent history of coughing up blood. After Paxton was assessed, he was cleared for the immunization. Lucky him!

Paxton seemed to be doing well throughout the day. Susanne did not notice any more episodes of coughing up blood. Also, he was able to sleep through the entire night last night without waking up crying in pain. This was relieving. Even though Scott and Susanne would have loved to know the cause of the blood, they were content with the fact that he was at least feeling better.

Emergency! Emergency!

While most people were sleeping and resting up for a labor day full of relaxation, Susanne was headed into work. This was her one holiday that she had to work this year.

As Susanne arrived at work, she received a phone call from Scott. He was calling because Paxton was coughing up blood and Scott was concerned. He wanted to make sure that this was not something that had happened before since Paxton had a lot of idiosyncrasies. Susanne had definitely never seen this. Her first instinct was to panic, but she knew that would not benefit anyone. She put on her thinking cap and thought of a few things Scott could check out before they got worked up. She had Scott evaluate Paxton's mouth for any evidence of a cut or injury. She had him rub over his gums where he was cutting teeth to check for blood. Lastly, she had him check his NG tube and look for evidence of any ulcerations on the inside of his nose. He found nothing. According to Scott, it truly seemed to be coming from deeper down. At this point, they both thought that it would be a good idea to take Paxton to the Emergency Room. In the meantime, Scott called the pediatrician's office to speak with the doctor that was on-call to see if there was anything that he could do for Paxton until they arrived at the hospital.

This was definitely a situation where Susanne's background and knowledge didn't help calm her nerves any. She knew too much and that was scary. Her brain ran through all of the different possibilities as to what the problem might be. Hopefully, it would turn out okay. She started thinking about how ironic it was that the last patient that she saw at the clinic before she left for the ER was a dog that was coughing up blood the night before. Unfortunately, he came in on emergency in full blown congestive heart failure and didn't make it. It was times like this that she thought ignorance might very well have been bliss.

Scott, Poppy, and Paxton arrived at the hospital first. They were taken immediately back to an exam room. The nurse did her initial assessment and thought that he looked stable. Shortly thereafter, Susanne and Moppy got there. They made it just in time to meet the doctor that came in and evaluated Paxton. She thought that he looked good overall, considering the amount of blood he had coughed up. She was thankful that Scott had brought in the paper towels with the evidence on it so that she could try to quantitate the amount of blood present. This was Susanne's first glimpse at what came up. She was truly shocked at the sight of it. It sure seemed like a whole lot of blood to her. After the doctor completed the exam, the only concern she had was that his lungs sounded crackly. On a more positive note, his temperature was normal and his oxygen saturation levels were hovering in the mid-eighties, which was where they had been for the last couple of months.

The doctor requested three diagnostic tests, which would determine whether or not Paxton needed to be hospitalized. The first test was assessing the stomach fluid that they acquired through gastric lavage. They basically flushed multiple syringes of sterile saline down his NG tube into his stomach and then aspirated it back out to look for evidence of blood. Luckily, the stomach contents were clear. The doctor also ran a fecal occult blood test, which showed trace amounts of blood in his stool. Susanne made sure to inform her that this was a typical finding for Paxton. The last test was x-rays of his chest. The doctor knew that his heart would look abnormal, but she really wanted to evaluate his lungs. She was interested in ruling out full blown congestive heart failure, aspiration pneumonia, or a consolidated lung lobe. Thankfully, the lungs looked clear despite what she had heard with her stethoscope. The doctor thought about running some blood work to look for evidence of any clotting problems or anemia, but she decided against it. Since she could not find a cause for him coughing up blood and he otherwise looked good, she said that he could go home for close monitoring. They were informed that if the clinical symptoms returned, then he would definitely have to be admitted into the hospital for observation.

While they waited to be discharged, multiple residents came into Paxton's room to take a listen to his heart. The severity and nature of his heart murmur was a rare find, so everyone wanted to hear it. Paxton was such a great patient through it all. He served a greater purpose that day. He was used as a learning tool. Paxton was able to help expand the knowledge of the up and coming doctors on his congenital heart condition. The more people learned about Ebstein's Anomaly, the better chance of finding a more successful approach to stabilizing the condition. Go Team Paxton!

Susanne and Scott were so relieved that everything turned out okay. Susanne headed back to work to finish out her shift while everyone else went back home to monitor Paxton. Once everything settled down, Poppy loaded up the car and got on the road back to NC. He was going to be missed by all.

Susanne returned home later that evening to a sleeping baby. Paxton had done well the rest of the day with no other evidence of blood. The cause of the episode this morning still remained a mystery.

Let's Go To The Movies!

It was amazing how much exhaustion could affect every part of a person, whether it be in decision making, talking in coherent sentences, how graceful one was, and just trying to keep one's eyes opened. It helped that Poppy was around because it motivated Scott and Susanne to get up and do something with their day.

Susanne always enjoyed cooking for people when they were visiting. She decided to make a big breakfast for all to enjoy. Her father had always told her that breakfast was the most important meal of the day so it was only right for her to show him that she listened well. She decided to make melt in your mouth pancakes along with a side of bacon and medley of fruit. Paxton even joined them at the table to enjoy the spread. He actually sat in his high chair for the first time ever. The high chair almost looked like it had swallowed him whole. He could hardly even get his hands over the top of the tray. He really seemed to enjoy looking at everyone while they ate and carried on. He even attempted to chime in a few times.

Scott and Susanne had planned something special for Poppy. They had asked Moppy to come babysit Paxton while they took him out for a special treat. They took him to the movies to see "The Expendables". Poppy didn't even know what he was going to watch until it started. He was ecstatic when he found out. Poppy loved to watch movies, especially action films. He didn't take his eyes off the screen for one second even to reach for popcorn or sip his Coke. Luckily, the bucket of popcorn was so big that he would have had to try really hard to miss it.

The movie was excellent. It was nice for them to see some of the most memorable action heroes from the past get together to make a movie. It had Sylvester Stallone, Jason Statham, Jet Li, Dolph Lundgren, Eric Roberts, Randy Couture, Steve Austin, Mickey Rourke, and even had appearances by Bruce Willis and Arnold Schwarzenegger (the current governor of California!) Susanne was just impressed that she stayed awake for the whole thing, especially with her history.

Once they got home, Scott and Susanne decided to go on a nice long walk with the dogs. They knew that Paxton was in good hands. It was so exciting for them to be able to get out of the house and spend some time together. They always had their best talks while walking hand in hand.

Susanne decided earlier in the day to make it easy on herself for dinner and pull out one of the fabulous meals from the freezer that one of her friends had so kindly made for her a while back. How ingenious! Dinner was ready to eat after being warmed in the oven. Everyone enjoyed dinner as they watched more movies together. Moppy left shortly after dinner. Scott decided to make homemade peach milkshakes for himself and Poppy. Susanne was only able to eat the peach. So Jealous. (She did sneak a tiny sip from Scott when he wasn't looking, though!)

Daddy's Turn

Poppy arrived shortly after 1:00am. He was greeted with open arms. It was so nice to have him up for a visit. Paxton couldn't wait to show him all of his new tricks.

After the rough night that Susanne had with Paxton the evening before, she hoped that Paxton would sleep the whole night through. Unfortunately, no such luck. Around 2:30am Paxton started to gag and dry heave again out of nowhere. Susanne was so tired after being up late with him the previous night that Scott decided to take this shift. Susanne really needed to get her rest so that she'd be able to function throughout the day at work.

Scott found that Paxton's discomfort was relieved only by being held by his daddy. Changing his diaper, repositioning him in his bed, even stroking his hair or patting his back proved ineffective. Unless he was wrapped up in his daddy's arms, the little bug would continue to cry and gag. Scott could think of a million worse places to be than sitting in a rocking chair holding his son. The sound of Paxton's breathing slowing down and the feeling of his tiny hands clinging to his shirt was enough incentive to stay with him as long as it took for him to be able to fall back asleep. That point finally came around 4:45am. Scott was then able to place Paxton down in his crib, cover him up, and kiss his fuzzy little head goodnight. Scott quickly realized that this was only an hour and 15 minutes before he would need to get back up to feed him again. He had offered to take over this shift as well so Susanne could get every last drop of sleep that she could before work. Luckily, Poppy would be there throughout the day to help Scott with playtime and therapy for Paxton.

Scott started of the morning by making his special breakfast burritos for Poppy. They decided to take it easy and watch movies all day. They had a lot of male bonding time over beer and ice cream cake. Paxton tried to hang with the big dogs as long as he could, but quickly got tuckered out.

Scott was definitely starting to understand how tired Susanne must have been when she had to do everything by herself while he was away. Scott thought that she had absolutely earned the title of "soldier" because of how amazing she was in managing Paxton's care and life thus far. Scott was in awe.

You Know Like, Nuk Brush Skills, Swatting Skills...

So...Paxton had a rough night. He woke up around 11:30pm dry heaving and gagging. Susanne held him for a while and then tried putting him back to bed. He continued to retch. He would calm down momentarily when he was in her arms. She tried to see how he would do in his bouncer or on his wedge, but he wanted nothing to do with them. For some reason, the only place he was able to get comfortable was in his mother's arms. He continued to struggle and just could not settle. Susanne was extremely worried because he would hold his breath and panic during the episode, which in turn made him appear very pale. Susanne contemplated calling the doctor on call, but she wanted to try a few things first before she got too worked up. After an hour, Susanne decided to remove his NG tube even though it seemed to be well secured. She wondered if it was causing more irritation especially since he had spit up a lot throughout the day. Time passed them by. Susanne called her oldest sister, Leah, for advice. She was very reassuring and helpful. Susanne decided that once Paxton appeared sleepy again, she would replace his NG tube, apply some Orajel to his gums, and feed him. Susanne wasn't sure what made the difference, but he ended up finally falling asleep around 2:45am. He didn't wake up until close to the 9:00am, unlike Susanne who had to get up to feed him at 6:00 am. She was just thankful that he was able to rest.

Susanne decided to work with Paxton some once he woke up. Susanne bought him a new toy yesterday that played music and lit up if he hit it with his hands. He appeared to really enjoy it. It was so exciting to see the process of cause and effect register in his little brain.

Paxton tired quickly and he was ready for a nap in no time. For some reason, Susanne got the urge to clean while he was sleeping. She was able to get a lot done before Paxton's therapy appointment. A clean house always made Susanne feel so good.

Susanne had to wake Paxton up right at the beginning of his therapy session. She knew that he needed as much sleep as he could possibly get with a night like he had last night. He ended up doing surprisingly well. He did not gag, dry heave, or spit up the entire time, which was a small miracle especially since today they were working on oral motor skills. The therapist brought a new tool for Paxton that would help work on reducing oral hypersensitivity. It was something called a Nuk brush, which was used commonly by therapists to encourage oral stimulation and provide sufficient sensory input for the child's mouth. Paxton allowed both the therapist and Susanne to massage his face, gums, and inside of his cheeks with it. He even accepted the Nuk brush between his upper and lower jaw. He would occasionally munch on the nubby end. They even tried placing one of his vibrating teething toys against the brush to provide some additional gum massage. He was more receptive than they both had anticipated. This was very exciting and an obvious step in the right direction.

Susanne worked with Paxton throughout the day in between his naps. They even listened to a couple of his new CD's that Moppy gave him recently. Paxton really seemed to like the CD that had a compilation of silly songs. He had a wonderful day full of kicking, swatting toys, lifting his head, smiling, and laughing. Susanne was so glad that he was feeling better.

Paxton went down for the night with no problem. He was going to be so excited when he woke up tomorrow to find that Poppy had come up for a visit.

What Was That? I Can't Hear You...Ear Tubes You Say?

Susanne must have fallen asleep on the couch because she woke up at 2:00am in a state of confusion. She had missed Paxton's midnight feeding by accident so she had to make it up by feeding him before she headed off to her real bed. Fluffy Diaz sure didn't mind the extra snuggle time on the couch.

Early today, Paxton had an appointment with an ENT doctor, also known as an otolaryngologist. Susanne was finding it quite difficult to muster up the energy to get ready. It was a constant battle for her to get motivated early in the morning. She always had to decide whether she really needed to compromise a few more minutes of shut eye for a shower or if the extra amount of sleep was worth it. It really depended on the day. No matter what, she never felt like she had enough time to get ready and out the door. She was always cutting it close, down to the wire.

The otolaryngologist evaluated Paxton today so that he could be approved for his follow up hearing test. Upon examination, she was concerned about fluid that she observed in Paxton's left ear. Despite this finding, she decided to pursue the hearing test anyway. They were transferred to an audiologist for the administration of the test. Susanne had to sit with Paxton in a booth where the audiologist called out his name and whistled at different volumes. The sound would come out of different speakers so that they could assess if he would follow the noise by looking. This would determine if he could hear or not. Due to Paxton's developmental delays, he was unfit for this test. He wasn't quite able to respond to sound in that way. The next test that was performed was called tympanometry. This was a test that would determine the condition of his middle ear and confirm if he had fluid present. They assessed this by changing the air pressure in the ear canal and recorded the response from the ear drum. Unfortunately, Paxton had a flat graph, which meant that he truly did have fluid in both of his ears. This was a common finding for children that had Pierre Robin Syndrome because of the cleft palate. Due to the opening of the roof of his mouth, fluid was predisposed to backing up into his sinuses. If he could not clear it or if the fluid proved to be too much, then the fluid would eventually flow into the middle ear. This was possible because the middle ear was connected to the nasal cavity by way of the eustachian tube. Since Paxton had fluid in his ears, the audiologist could not perform the other hearing test because he would fail. This would happen because the fluid build up in the middle ear space would interfere with the BAER test. The solution? Ear tubes. This would help resolve this problem. Paxton would have to have little cylinders placed through his ear drum to allow air in the middle ear. As a result, it would help to drain the fluid. The otolaryngologist was going to try to set up this procedure to be done along with his G-tube placement. In order for this to occur, Susanne would have to find time to take Paxton to see an ENT surgeon before the surgery day. Hopefully, they would be able to coordinate the schedule.

Susanne had to stop by work to place a few calls to some of her clients. In the meantime, Paxon got to visit with Aunt Julie and see how big her baby bump was getting. Julie also noticed how big Paxton was getting and could not believe that Susanne was still carrying him in his carseat without any assistance. She mentioned that she might want to look into the Graco Snugride Stroller. This might very well change her life. It was a lot smaller than the other stroller that Susanne already had. She made sure that Babies R Us was the next stop before heading home.

Once they were home, Susanne put Paxton down for a nap so that he would be geared up for Aunt Leeny and Uncle Loonie's kickball game. Susanne made some important phone calls while he was resting up. There were many days that Susanne felt more like Paxton's personal assistant than his mother. Her days were always full of some sort of paperwork, phone calls, copying this or that, faxing something, getting him a latte minus the espresso, etc. Luckily, he was worth it.

Aunt Leenie called Susanne right before they were about to leave to inform her that she thought that it was too hot for Paxton to be out there for the kickball game. Even though she would have loved to have two cheerleaders there, she didn't want Paxton to be miserable, especially since there was no areas of shade.

Susanne decided to take Paxton, James, and Fluffy Diaz for a short walk instead. Earlier, she assembled the new stroller and she was excited to get to use it. Everyone did great. Susanne counted it as a success since she made it back in one piece.

After they got back, Paxton was drenched in sweat. Susanne was glad that she had followed Colleen's advice and didn't go to the game. Susanne decided to give Paxton a bath and then it was time to go night night. What a busy day. Phew!

I'm Pooped!

Susanne decided to give Paxton a bath before his appointment with the pediatrician this morning. This was always a great way to start the day.

Paxton's doctor thought that he looked good overall. The only concern was that she thought that his liver was slightly larger than it had been in the past. This was worrisome because it could indicate that the right side of his heart might be failing. When this happens, the blood backs up into other parts of the body such as the liver. Paxton was already on a diuretic to try to remove any excess fluid, but it may not be enough. This wasn't completely unexpected because he had Ebstein's anomaly. This was the very rare heart defect he was diagnosed with when he was born. It was a result of the tricuspid valve not developing correctly as he developed. In turn, the right ventricle was smaller than normal and didn't pump enough blood to the lungs adequately. Thus, the right side of his heart was not ever going to be normal. If he was truly in full blown congestive heart failure, his prognosis would be worse. The pediatrician was going to place a phone call to Paxton's cardiologist sometime today to get advice on what they should do as far as the next step.

Paxton went down immediately for a nap after they got back home. Anytime they had to leave the house, Paxton expended a lot of energy and was usually extra tired the rest of the day. Susanne decided to sort through Paxton's clothes while he was sleeping. She wanted to put anything that he had outgrown into storage. She could not believe how small he used to be. Looking at the newborn outfits got her reminiscing of times past. She was so thankful to have her little boy in her life.

Before Susanne knew it, she had to head to work. Later in the day, she finally got a call from someone in the surgery department at Children's National Medical Center. They had decided on 09-15-10 as the date for Paxton's G tube placement. They reminded Susanne that he would need to be hospitalized for a minimum of three full days. Hopefully, all would go well.

Susanne also got a call from the pediatrician to let her know that she didn't need to change anything at this time for Paxton. The cardiologist was more interested in Susanne monitoring him for a change in his clinical signs. If his overall color changed or if his breathing appeared more labored than it normally was, then she should contact them immediately.

Susanne got home at a reasonable hour. She was informed that Paxton had been unable to settle over the last couple of hours. Susanne took this opportunity to snuggle with him and try to get him to relax. She put him to bed and it was off to la la land he went.

Afterwards, she ate some dinner and then curled up on the couch with the dogs.

Stubborn Bug

Susanne decided that the lawn was well overdue for a drink. Scott had recently purchased new sprinkler heads because the older ones weren't cutting it anymore. Susanne spent a lot of time trying to position the sprinklers in the perfect spot so that the water would reach most of the yard. By the time she had finished...she was soaked. It was quite a sight to see. The neighbors probably had a few good laughs at her expense.

Paxton was a little lazy during his therapy appointment today. He didn't want to fully participate no matter what skill they were working on. He refused to lift his head all by himself without assistance. He decided he liked being babied. Susanne wasn't given any new skills to work on with Paxton since he hadn't progressed much since the last therapy session. Better luck next time.

I Hope You Dance

I hope you never lose your sense of wonder
You get your fill to eat
But always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small
When you stand beside the ocean
Whenever one door closes, I hope one more opens
Promise me you'll give faith a fighting chance

And when you get the choice to sit it out or dance
I hope you dance
I hope you dance

I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Living might mean taking chances
But they're worth taking
Lovin' might be a mistake
But it's worth making
Don't let some hell bent heart
Leave you bitter
When you come close to selling out
Reconsider
Give the heavens above
More than just a passing glance

And when you get the choice to sit it out or dance
I hope you dance
I hope you dance

I hope you still feel small
When you stand beside the ocean
Whenever one door closes, I hope one more opens
Promise me you'll give faith a fighting chance

And when you get the choice to sit it out or dance
DANCE!!!