Going Under

Last night, Scott and Susanne decided to skip Paxton's 9:00pm feeding and just lump it in with his continuous feeding. They ended up starting the continuous feeding around 10:00pm, which was much earlier than normal. All of these changes were because Paxton wasn't allowed to have any formula after 5:30am because he was going under anesthesia today. It ended up being perfect timing because Paxton decided to wake up at the same time that Susanne was disconnecting his feeding. He was stirring in his pack-n-play and seemed restless. Susanne was hoping to pick him up before the gagging episode began. He let out a big burp which was a good sign. She lucked out at first, but the second Susanne decided to lay him back down, he started gagging. Paxton obviously didn't want to ruin his long standing record of gagging everyday. After that was all said and done, he finally closed his eyes and slept for another few hours.

Around 8:00am, Susanne started him on a bolus feeding of just Pedialyte. This was the last meal he would receive until after his full day of diagnostic tests. He wasn't even allowed to get any of his medications this morning so that his stomach would be as empty as possible. This would help to decrease his chance of vomiting while being put under anesthesia, which in turn would decrease his chance of aspiration.

Susanne, Scott, and, Paxton didn't need to show up for the first appointment until around 11:30am. This was such a nice change from having to be the first people to arrive. It allowed for all of them to catch up on some sleep and to run a few errands before heading over to the hospital.

They had to plan out their days well because they needed to make sure they had enough time to get to the hospital on foot. The place they were staying at was almost one mile away from Children's Hospital Boston. They were very familiar with this walk and had done it many times before. They actually enjoyed the exercise and getting the fresh air. It especially gave them a sense of freedom on the days they were forced to be cooped up inside the hospital all day.

After their brisk walk to the hospital, they arrived right on time. This didn't seem to matter because Paxton didn't even get called back until after an hour of them being there. As they sat in the waiting room, they overheard discussions between the rest of the families about their current situations. All were just as devastating as the next, but the recurrent theme throughout was that each and every one of the kids dealing with a congenital heart condition were such fighters. Not all of the parents had that kind of strength, but the children were for sure the resilient ones.

Paxton was finally taken back to a prep room where Susanne and Scott changed him into his "Johnny" for the day. Unfortunately, this was an all too familiar setting for them. After the nurse got a brief update on Paxton's status from overnight, he was then moved to the induction room. Susanne was given the pre-medication to give Paxton through his G-tube to make him sleepy. It made them feel a little bit better that he was nothing, but giggles and smiles until the moment they had to leave. While Paxton was being induced under anesthesia, Susanne and Scott were encouraged to go grab a bite to eat. They all knew it was going to be a long day of waiting and there was no use in waiting around on an empty stomach.

After about an hour of Paxton being under, Susanne got a phone call with an update. Paxton was doing well thus far. It would be another hour before they heard from them again. The cardiac MRI was still taking place. Once they completed that test, they would move on to the heart ultrasound.

The second phone call came at exactly an hour later. They had just finished up with the first test and were beginning the echocardiogram. They were told yet again that it would be another hour before hearing anything. The waiting was a killer.

It was around seven hours after they arrived this morning that they called Susanne and Scott to go back to visit with Paxton in the recovery room. He was still very groggy from all of the medications he had received, but he seemed content. Paxton had done well under anesthesia and woke up with no obvious problems. Paxton would have to stay under the doctors care for a few more hours so they could monitor him closely for any difficulties such as an allergic reaction. They would also need to make sure that Paxton could handle starting his feeding schedule again.

They gave Paxton one dose of intravenous Lasix while he was recovering since he had missed two doses already today. Since they had him on a low rate of intravenous fluids during the procedures, they wanted to make sure they hadn't overloaded his heart. Susanne held Paxton and offered him an oral swab while he was trying to recalibrate. He always seemed to do much better in his mommy's arms.

Once he got clearance to leave, they headed back to the Yawkey House. They quickly realized how nice it was for Paxton to be able to come home with them at night. This was much different than the last few trips to Boston, which were for some of his major surgical operations.