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.