9 Months After Surgery

It seems like a distant memory now. It’s hard to believe what all my little boy has undergone. His scar is fading away and we are happy to be moving onward. The most anxious and worry filled months are behind us now. Those moments were tough and it was like my body went into autopilot and somehow I was able to remain strong and calm. It was as if someone else was filling me with strength. The prayers from family and friends were surly the cause. It’s funny how you just manage. Watson is doing so great. I’m so proud of how his personality has remained unchanged. He’s developing into a confident little man and I could not be happier for him. We are all stronger now.

Here’s a video of Watson 3 days after surgery. His chest tube is still in place and you can see the collection tank we had to carry around with him for 4 days that measured his drainage. His arm was still wrapped up with IV’s in place. He even had one you can see in his neck. Despite all this he was able to enjoy being pushed around the hallways outside of his hospital room.

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Surgery

At 6 am we were admitted for in patient surgery and then escorted to a sort of pre-surgical holding area. It was a large room with many other surgical patients all separated by curtains. There we answered some last minutes questions and they gave Watson some medicine that was suppose to relax him well enough to be handed over to a nurse and carried to the OR. After about 10 minutes or so Watson began to kinda stare off and zone out. He seemed relaxed but then began to cry went we tried to hand him over to the nurse. She had puppies on her face mask and was trying to get Watson to focus on them. The anesthesiologist decided to let me just carry Watson myself to the OR. I had to quickly gown up and carry him down a series of hallways. Fighting back tears I held Watson tight in my arms and assured him everything was going to be ok. He seemed kinda content and obviously had no clue what he was about to face.When we arrived to the OR he was relaxed enough to not mind the nurse taking him. That was the scariest moment handing him over and it was difficult to not just break down. I had to walk away and I felt totally helpless. My work was done. Now it was time for the surgeons.

I eventually met back up with Greg and we went up to the seventh floor to meet up with the rest of the family in the waiting area. Those 4-5 hours we waited are all kinda of a blur. We had both sets of Watson’s grandparents with us and my sister. They were good distractions for Greg and I. I would recommend for anyone going through something similar to have family and friends with you during this time. It was comforting to have them around and talking keeping us from panicking. We set up a online carepage through the hospitals website which we used to update our friends and family about how Watson’s surgery was going. This allowed us to write several updates as we got them and
kept us from having to make a zillion phone calls. Our friends we able to post back with their prayers and thoughts. I later made the carepage into a remembrance book.
We got three updates from a nurse while surgery was underway. The first was to let us know that surgery had begun and everything was going well. The second was that he was on the bypass machine. The last update was that he was off bypass and breathing on his own. We were told the surgery went well and Dr. del Nido would be out soon to speak with us. The relief had washed over us all. I could breath again. Dr. del Nido surfaced and briefly explained that he had repaired Watson heart and mentioned something about his unusual heart anatomy. I really wish I could remember this conversation, but again this part is blurry. I just remember finally feeling relieved and so grateful to have had del Nido as Watson’s surgeon.

We later asked for Watson’s medical records and when they arrived in our mailbox it was then that we learned the specifics of the surgery.
Watson’s final diagnosis was:

Inferior Sinus Venosus Atrial septal defect (SV ASD) with Partial Anomalous Pulmonary Venous Return (PAPVR) and malalignment of the septum posteriorly.

They discovered that the inferior right pulmonary vein was draining into the right atrium rather than to the left atrium mixing oxygenated blood with unoxygenated blood. The heart was enlarged due to right ventricular volume overload. The inferior right pulmonary vein was draining into the right atrium where the inferior vena cava also drains into the right atrium. The ASD was cloer to the inferior vena cava. The malaligned septum was detached from the atrial wall where it had been attached posteriorly and moved to create a new septum between the inferior pulmonary vein and the inferior vena cava. The newly positioned septum allowed for a correct pathway into the left atrium for the inferior pulmonary vein. Then a pericardial patch was used to close the inferior sinus venosus ASD. The eustachian valve was noticed to be prominent with the potential of causing an obstruction so it was then resected up to the free edge of the atrium.

Boston

For the first 10 days in Boston, we stayed at “the House on Autumn Street”. It was patient housing set up through Boston Children’s Hospital. Reservations were made easy enough online and for $30 a night it made for an out of towner blessing. Watson really enjoyed staying there up until his surgery. There were toys for him to play with and Disney movies for him to watch in a common area. They even had community donated food items in a stocked pantry and refrigerator. I especially loved that they had hand sanitizer and Lysol wipes everywhere. This was a relief because keeping Watson germ/cold free before his surgery was a full time job. We met so many kind people there and it really was refreshing to bond with people going through similar situations.

The Friday before Watson’s surgery the longest day by far. From what we had heard about, pre-op days were suppose to be hard so we prepared ourselves to expect an exhausting day. Watson had a sedated echo scheduled for noon so he wasn’t allowed to eat breakfast and he was only allowed to drink clear liquids until 10:30 am. We spent the morning having x-rays, getting blood drawn, having an EKG, meeting with different doctors and taking a tour of the Cardiac Intensive Care Unit. It was a lot of information to take in and we tried our best to get our growing list of questions answered. As the morning passed by Watson was growing fussy and tired. It was hard following him around everywhere keeping him out of trouble and constantly wiping his hands clean. I was so worried about the flu outbreak too. Finally it was time for his ECHO. While that was taking place we finally got to speak with Dr. Pedro del Nido (or Pethro del Neato). He came in our room unannounced. As soon as I saw him I immediately recognized his face. I think I actually jumped a bit because in my mind he’s like this miracle worker. He explained to us that in addition to Watson’s large ASD they also thought he had mis located pulmonary veins that needed to be re-routed. This news was a little unsettlingly because this was the first time we had heard about this. (After the surgery we learned that his septal wall between the 2 atria was also mal-aligned. The septum had to be re-routed between the inferior vena cava and the inferior pulmonary vein. It was confusing to tell from the ECHO exactly what was going on.  His final diagnosis was Inferior Sinus venosus atrial septal defect with partial anomalous pulmonary venous return or SVASD with PAPVR). Dr. del Nido was patient and compassionate. He explained different scenarios and was pretty confident that he could repair everything. I think he even said the actual heart surgery part would only take 30 minutes. He re-assured us that our timing for having this procedure done was right and that Watts would be in the best possible care. I even made sure he specifically was going to do the surgery and that he wasn’t going to watch over it knowing that Boston Children’s is a teaching hospital. He kinda chuckled at my question and said that he himself was going to take care of everything and not to worry. It was such a relief to finally meet him and he really did put me at ease. We left the hospital around 4pm. Watson’s surgery was scheduled for first thing Monday morning. We had to be at the hospital at 6am. That left us with the weekend to get through.

Home Sweet Home

It’s been 3 weeks now since Watson’s surgery. I honestly can’t believe how fast he’s recovered. The surgery went well and we even survived a blizzard. Perfect timing Blizzard Nemo. Looking back over things, the build up until the surgery may have been the hardest part. It’s like a huge stress ball cloud was weighing over my head for a year. In November we were notified that the surgery was scheduled for February. That lead to 3 months of shear terror in my head. My Christmas was blurry because so much was on my mind. The worry was consuming at times and I think I broke the world record for sweating non-stop for an entire month (January). Just getting up to Boston was a huge ordeal. We had to pack for 16 days away. I had never even been on a vacation for this long. Our gear included 2 carry on bags, 4 suitcases, a joggling stroller and a car seat. Luckily Greg sat down the night before our flight and came up with a way to attach our car seat to the front of our stroller. I was so nervous about traveling with a toddler, that I over packed thinking Watson would need tons of books and toys. It turns out all he really needed were a fews books, a ball and 2 matchbox cars. Oh well.

“pethro-neato”

Here it is. The time has come to pack it up and begin our journey. In two days we’ll be on our way to Boston. We’ve been asking Watson if he wants to ride in an airplane. He repeats back “air-pane”. We ask do you want to go to Boston? He repeats “bos-ton”. Then we ask if he wants to see Dr. Pedro del Nido and he repeats some sort of gibberish “pethro-neato”. It’s a pretty funny routine. I don’t think there’s anyway to prepare him for whats about to happen, but just in case, I’m trying. I’ve been putting spongebob bandaids on his chest to get him used to the feeling of having something there. He calls it his “stic-ker” and really likes to show it off. I guess that’s a good thing. I think he’ll be proud of his scar. We were packing his clothes last night and he started to pile up all of his stuffed animals right on top of the bag. I just wonder what is going on in his little head. He must have some sort of idea what the bag means. I try to tell myself that we’re going to make the best of this and everything is going to be fine. Anxiety is turning to anticipation. I’m slowly feeling like “Let’s do this”.

 

Count down

It’s official. The date is set and we are booked for an over 2 week trip to Boston. When I leaned that Watson’s surgery date was scheduled for early February I could feel yet another wave of emotion come over me. This has been a roller coaster and it’s only just begun. How do you prepare yourself for an experience coming up like this? I’ve been reading up on the specifics of the surgery and looking at pictures of children around Watson’s age in the CICU. I’m making a list of all the things we need to pack up and take with us. I’m not sure how we’re going to transport all this gear. 3 suitcases full of clothes, a car seat, a jogging stroller, toys, dvd player, computer, books ect. I am going to be a spaz at the airport I’m afraid. There’s so much on my mind and so many things to plan. My anxiety level is rising now that the surgery is approaching. I know that the period when Watson goes into surgery is going to be the hardest time of my life. I wonder if I will be a sobbing mess or not. How will I handle myself during those hours? I read somewhere that giving blood was a good way to kill some time. Maybe I could go do that. I doubt I’ll be able to read. Maybe I could download some games on my phone to play to occupy sometime or buy some stupid celebrity gossip magazines to flip through. Either way I’m really going to have to distract myself so I don’t work myself into a panic attack. Maybe I need to be sedated like a dog afraid of fireworks. Uhhh. I’ll force myself to do some yoga breathing. I may have to escape to do this so people don’t think I’m a total wacko. Tic tock.

Phone Conversation

After a few rounds of phone tag, I was finally able to speak with Julie over the phone. She lives in Knoxville, TN and visits Charleston from time to time.
She insisted on telling me her son’s story and said she wanted to somehow pay it forward with the knowledge she gained from her experience. She went on to explain that she had watched a news bit on tv about young athletes collapsing due to undetected heart problems. After watching that she started thinking about her son Magnus, who always looked wiped out after sports practice. So she scheduled an appointment with his pediatrician who casually referred them to a cardiologist. The doctor explained that he thought her son was perfectly healthy but this referral was just to ease her pregnant at the time mind. They would eventually discover that her son did indeed have serious complications with his heart which would require complicated open heart surgery. She went to the best hospitals (in the Northeast and Midwest) to interview different doctors and their diagnosis and treatment plans were all similar. Her final stop was Boston Children’s Hospital. Dr. Pedro del Nido, chief of Pediatric Cardiology, looked at her sons records and saw a completely different scenario. With his experience he was able to see several congenital defects that were missed by all the other hospitals and explained that her son was lucky to be alive. After a few weeks the surgery was scheduled and a success. Dr. del Nido even had to make several quick decisions during the surgery as things were worse than he thought. Anyway Julie went on about how many opinions she got for her son and how she had been to so many different hospitals. She basically was saying how important second opinions are and that if my son needed heart surgery she knew the best surgeon and that the best hospital was Boston Children’s Hospital. She praised and praised them. So to make a long story short we have gathered up all of Watson’s records and sent them to Dr. del Nido. From what I’ve researched about this dr and hospital it seems more and more like the place to go. I cannot thank Julie enough for speaking with me. She was so pleasant and it really was nice to hear from someone who has been in similar shoes. I know Watson’s condition isn’t nearly as bad as her sons, but still if my son is going to have his chest cracked open and be put on a heart and lung bypass machine while they repair a 1.4cm hole in his heart, I want the best.

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