Heart of Beckett

UPDATE 3/13/16

Well, after two long nights of Beckett not wanting to sleep in a foreign bed, he is home and sleeping soundly in his crib. This weekend was definitely unexpected, especially since a little over a week ago Beckett had his quarterly cardiology appointment and his GI appointment last week, both of which went wonderfully. However, in the ER, one of the first things we tell patients is to follow up with a primary care provider, so, in an attempt to avoid looking like a hypocrite, I took Beckett to his doctor Friday morning. We were really just going to say “Hey, we were seen in the ER on Sunday, and he is doing much better”. Sadly once we got there, his oxygen saturation was a little too low for comfort so we earned ourselves an overnight observation stay in the Peds unit. It was only a few short hours before it was determined that Beckett would be better suited at Riley and we were on our way to Indy. To top it off, when Lifeline rolled in to Beckett’s room at Ball Memorial, he stood up and did a somersault in his crib. It was hilarious. He was probably the least sick “sick kid” they have ever transported. He loved the ambulance ride. My dad got him a toy ambulance when we arrived at Riley ER and all weekend Beckett played with it saying “I wanna ride it”.

Throughout the weekend they tried both on and off oxygen, neither of which showed a true difference, did a repeat Echo Saturday morning which still looked good, and he tested negative for the flu. It was determined he was taking longer to recover from the virus he had last week, which was continuing to affect his respiratory system. They suspect as he gets over it, his saturation will continue to increase to his normal. Since they were really just observing him, and not providing him with any kind of intervention we were allowed to go home and continue to monitor his vitals closely.

Through it all, Beckett was so well behaved. We watched lots of Mickey Mouse clubhouse, played cars on the floor, took wagon rides, and dirtied virtually every toy in the heart center playroom. It looked like a tornado had gone through, which gave Jonny, my mom, and myself the privilege of sanitizing practically everything in the room. Despite asking numerous times “Go home now?”, Beckett never really complained. He didn’t pull at the oxygen tubing taped to his face, or his IV or the monitors. In fact, when his pulse ox would fall off he would ask us to “Fick [fix] it”, put his thumb up in the air, and say “This one”. He was full of please and thank you, and was truly a little trooper. He would even say “I sorry” if he accidentally pulled on a cord or wire. None of it really seemed to faze him other than sleeping at night in a different bed.

This weekend could have definitely been much worse, and we are so glad to be home after just two short days. As I mentioned, we did have our cardiology appointment a week and a half ago, and the current plan, should Beckett’s oxygen recover to his norm, is to have an appointment in August, a heart cath shortly after, and surgery after that. Should his oxygen stay low on a more permanent basis most likely all of that will come sooner. Jonny and I cannot thank you all enough for all the love, support and prayers. It is overwhelming how many people are invested in Beckett’s life and continue to follow his journey three years later. For that we are truly grateful.

UPDATE 10/7/15    To begin, Beckett did amazing yesterday with his heart cath. We could not have been more pleased with how well he handled both spending the day in the hospital and the procedure itself. We arrived just before nine and Beckett didn’t go into his procedure until twelve-thirty. So, we spent the morning taking Beckett on toy car rides, wagon rides, and chasing him around pre-op. The nurses, Jonny, Grandma Linda and I all took turns pushing and pulling Beckett through the department.  

We were blessed to have a nurse in the cath lab that has known Beckett since his St. Vincent NICU days, so it was a comfort as she wheeled him away. His procedure only lasted two hours and Beckett was extubated and awake when we got into PACU where Beckett was recovering. The nurses had Mickey Mouse Clubhouse playing, which is Beckett’s favorite, and he was lying quietly and perfectly content. He saw us coming from way down the hall and began calling mommy. It was music to my ears. He had to lie flat with his right leg straight for the next four hours. The nurses could not believe how well he did for such a young age. He lay there just like he was supposed to. They put him in an adult bed to go upstairs to the floor so that I could lay with him and help keep him still. Beckett loved it. When we got upstairs we were greeted by both Jonny and I’s parents and Beckett’s face lit up like Christmas morning. This kid truly is a lover. It wasn’t until about hour 3.5 that he got restless and we let him open a few gifts people had gotten him. You could tell he had been through a lot. The sweet boy kept asking “yap?” because he wanted to sit in my lap, and it broke my heart that I had to tell him no. When the four hours were finally over and I picked Beckett up, he pretty much didn’t let me put him down for the next three hours. Even getting him in the car seat to go home made him shed a little tear. It warms my heart to know just holding him comforts and calms his fears. We were discharged home shortly before seven and that was that. It took a while for it to sink in that everything had gone smoothly, just as planned, and we were getting discharged the same day. After all the times Beckett took the road less traveled it was incredible that we didn’t even have to stay over night. This boy has grown and gotten stronger, and is by no means the same sickly kid he used to be.  

Now down to the nitty gritty. The purpose of the cath was to obtain pressures and pictures. They looked at the pulmonary arteries, the right ventricle and the aorta. Especially important are the aorta and the left pulmonary artery because Beckett has had those ballooned in the past, and they need to make sure they are not stenosed (basically a pinch in the tubing if you will). These both looked great, in fact since having the second surgery the left pulmonary artery looks better than it used to. Before Beckett’s last surgery his pulmonary pressures were around 20-22. Ideally for that surgery they like them to be between 12-15. So, three weeks before the surgery Beckett was started on a special medication in hopes that the pressure would be lowered by the time his surgery rolled around. If you remember, the pressures had lowered enough at the time, which is why Beckett was able to have the second surgery. Here’s the amazing part; yesterday, the pressures were 9. 9! Single digits. That’s insane. The doctor was so pleased, he said it is very likely after Beckett’s completion surgery he won’t even need that medication any more. Praise the Lord! The doctor said things look absolutely great and he could not be happier with where Beckett is. It is one thing to look good on the outside, but it an entirely other thing to look good on the inside. One thing Beckett does have is what they call collateral vessels. They develop in these kids, especially early on, to bring more blood to the lungs. In previous caths they didn’t find any they thought they needed to fix. This time, however, at the last minute the doctor saw something he needed to take a closer look at. They had already accessed Beckett through the right side of his neck as well as his right femoral vein, so they accessed his right femoral artery and when they injected the dye the collateral vessel was bigger than they originally thought. So, they went ahead and placed four coils (springs with a mesh fabric) in the vessel, which plugs off the blood flow. This will decrease unknown bleeding in the next surgery. The coils will remain in place for the rest of his life, which is just a little added hardware, and will be a great benefit when they do his completion surgery. We are grateful for thorough doctors.  

The last little bit of information that literally almost made us fall out of our chairs is this:  

    Dr. Hoyer (the interventional cardiologist that performs Beckett’s caths) recommends his Fontan completion surgery in the next SIX WEEKS! Are you kidding me?!

With Beckett’s pressures as low as they are and how well he is doing, there is not reason to wait. He probably isn’t going to be more ready. The longer we wait the more likely this information will be outdated and he will need another cath before surgery. So, we are waiting for him to confer with Beckett’s cardiologist and the surgeon and they will let us know the next step. Until then we keep doing life, but Beckett could be having his final surgery before we know it. We will let you know when we know. Thank you for all the continued prayers and support. We felt it yesterday as strong as ever. Our boy is brave and he makes me proud each and every day.