Breath of Fresh Air

Last night was the first night that Susanne got to try out her new dual bottle warmer and bottle cooler. It was specifically designed to make nighttime feedings easier. She knew it would be more convenient, but she didn't know that it would change her life. Gigi was introduced to this phenomenal invention at the last baby shower she attended. She decided to get it for Susanne for this trip to Boston to hopefully make her life easier. She knew that everytime that Paxton needed a feeding, Susanne had to go from the third floor to the first floor to get the enteral bag and formula from the refrigerator. In order to heat the formula up, she would have to either run it under warm water or place it in a cup of warm water and wait until it reached the appropriate temperature. If Paxton was due for any medications, then Susanne would have to go down to the basement to retrieve the medication bag, pull up the medications, and bring the bag back down to the appropriate refrigerator. During the day, this wasn't such a big deal, but late at night was a different story. Now she could keep Paxton's enteral bag and evening feedings cold until it was time for them. When she needed to warm them, she just had to add water to the warmer and it would steam the bottle within seconds. It was brillant!

Susanne had to get up at 6:00am because she knew it would take her close to two hours to get everything ready and packed for the trip over to the hospital for Paxton's day of pre-op workup. She had to keep in mind that it was also a fifteen minute walk from the Yawkey House to Children's Hospital Boston. Susanne pumped first and then was going to hit the shower next. Unfortunately, both showers on their floor were occupied. She had to wait for over ten minutes before one became available. When she returned, she went to put on her makeup and remembered that she had run out of foundation the day before. Susanne didn't fear because she knew that Moppy had stopped by the mall yesterday to pick her up a new supply. When she asked Moppy for it, Moppy couldn't find it. She looked high and low for the foundation, but it was nowhere to be found. Now Susanne had to move into emergency mode. There was no way she could go an entire day without makeup...that was just a sin. They would ABSOLUTELY have to stop by CVS on their way to the hospital to find a substitute.

They were about five minutes late, which was mainly due to the difficulties they had with navigating the stroller through the ice and snow on their way to the hospital. Susanne had to first register Paxton for outpatient services in the admitting office. Luckily, this was the only appointment she had to go to without makeup on. Even though it was difficult, she survived. While they waited to be called back for their first appointment, Susanne had a chance to get dolled up. She felt much better after that.

At their next appointment, they were required to review Paxton's history in its entirety. This was no small feat. Susanne had to recall all of the details by memory because she didn't bring any of Paxton's medical histroy with her this time. It took her brain a few minutes to warm up, but then she was back on track.

Next, the nurse assessed Paxton. He weighed in at 18lb 1oz with his height being 29 inches. His oxygen saturation levels averaged around 92, but it went up as high as 96. He usually averaged in the high eighties, so this was impressive. His ECG looked comparable to what it had been in the past. Everything else checked out well, so he got clearance for the next phase of the pre-op workup.

While Moppy and Susanne waited to meet with the anesthesiologist, Susanne colored a picture for Paxton for Valentine's Day. It was a page of small hearts. She decided to go with a color scheme of reds except for the center heart, which she colored bright yellow. This was symbolized Paxton. It not only stood for his unique heart, but him as a whole. He stood out like a bright, shining star in a sea of others. His warmth emanating from deep within in him. Susanne was so proud of her sweet, baby boy. She was so blessed to have him as her special Valentine.

They met with the anesthesiologist and discussed in detail the plan for Paxton's surgery day. Susanne was able to ask questions and remind them of Paxton's medical issues. She made sure to request that they watch him extra closely after he was extubated because he couldn't swallow. Paxton didn't have a normal oral phase to his swallowing. He could only swallow as a reflexive response. There were definite times where he would panic and almost seem like he was drowning in his own saliva. This was by far Susanne's biggest concern this go-round. She wasn't sure how Paxton would respond to having his cleft palate closed, and still have to deal with the secretions in the back of his mouth with no escape route. She was sure that he would have even more saliva and some blood to handle after surgery because the surgery site was in his mouth. She was praying that his recovery from anesthesia would be uneventful. The doctor appreciated the reminders about Paxton's unique situation because not all children that had Pierre Robin Sequence had difficulty swallowing and definitely very few had additional heart disease.

After they were finished with the anesthesiologist, Moppy and Susanne were sent back out to the waiting room. This time it felt like they waited a lifetime for the next appointment. They were verbally informed of the plan for the actual procedure. They were given specific instructions about when to discontinue his normal feedings, when to discontinue his medications, when to feed him Pedialyte, and where to show up. Susanne was familiar with this whole process so it wasn't anything new.

Around 3:00pm, they were finished with all of the appointments. Moppy and Susanne finally got to eat some lunch. Susanne set Paxton up with his next feeding and he ended up falling asleep in his stoller. He had such a long day and was tuckered out. Even though he was all covered up, everyone seemed so interested in him. Some people even requested to see what was underneath the shade so they could sneak a peek. Everyone's response was always the same. They were all caught off guard by his cuteness. He was becoming a lady's man and he didn't even have to try.

Paxton didn't stay asleep long in his stroller because he could never get comfortable in that thing. Once he was back to the room, however, he fell asleep right away and napped the rest of the afternoon.

Moppy and Susanne decided to order in so they wouldn't have to take Paxton back out in the cold weather. The one place that they chose, wasn't delivering that night. This hardly ever happened, per the person that answered the phone, but it was just their luck. When they thought there was no hope for dinner that night, someone made a delivery of turkey wraps as a donation to the house. It couldn't have come at a more perfect time.

During dinner, Susanne and Moppy met a family that had been there for a couple of months. The daughter was suffering with something known as a neurogenic bladder and bowel. Usually, it was something seen in patients with spina bifida, but she didn't suffer from that condition. The doctors really couldn't find a reason for her to have the problems she had. The problem wasn't discovered until she was six years old. She was now eleven and had undergone numerous procedures to help her try to manage her bladder and bowel dysfunction. Unfortunately, the doctors had to resort to placing a colostomy bag and urine bag. She also had a G-tube, much like Paxton's, in order to be able to receive enough nutrition on a daily basis to maintain her weight. She had an amazing presence about her. She was very outgoing and precocious. She had an extremely positive outlook on life even though she had every reason not to. It was like a breath of fresh air that came at a perfect time in Susanne's life. God had such a funny way of working at times and Susanne was thankful for that.