The last time we saw Dr. Law for Jack's 6-month check-up he said that everything looked good and asked us if we were ready to start talking about scheduling his next surgery. With Jack's heart doing so good after his last surgery, there was never any immediate need for him to have his next one so it was always pretty much left up to us. We could decide when it was best for our family. Of course, I always wanted Dr. Law to just tell us what he thought was best. Eventually, after a lot of talking, praying, and waiting we decided that this coming summer would be best. That way he will have plenty of time to recover and get back to his normal self before he starts to kindergarten next year.
Dr. Law told us that we would schedule his cath for February and then surgery around the end of May so that I could be home with him for the entire summer during his recovery.
We got the call to schedule about two months ago. February 17th. It was on a Wednesday. Then, while I was in Disney World with the cheerleaders I got the prep call. That's the call where they tell you all about what to expect, when he can eat and drink, what to bring, etc. That's when it started to feel really real.
The week leading up to the procedure was full of fear, extra kisses, long talks, and tears. (All of the tears and fear came from Mommy, Jack was always brave and ready.) We talked to Jack a lot about the upcoming procedure. We never want him to be taken by surprise when we walk into a hospital and hand him to strangers. We want him to understand whats happening and why. We explained as much as we could both about his extra special heart and what was going to happen when we went to the hospital. He was excited because we told him he would get lots of "prizes" when he woke up from surgery. We prayed with him and for him a thousand times. We listened to his sweet voice pray for himself.
The night before the procedure we took Harrison to Nonna's for a sleepover. We were going to have to be at the hospital very early the next morning so we decided it was best if baby brother spent the night with Nonna so we didn't have to get him up early and out in the cold. Once we dropped him off we took Jack to his favorite place to eat- Cabo. He was wild and silly and sweet as always. We talked some more about surgery and prayed over him together before he fell asleep.
The next morning we woke our sleepy boy up and drove to Children's. They told us to pack an overnight bag just in case and Jack filled half of our suitcase with toys. When we got there they checked us in and put us in a room. Two very sweet nurses came in and explained what was going to happen and then Dr. Law came in and talked to us about the procedure and what he was going to do. He explained the risks. Then he said they would go back in about half an hour. Just after he left our family came in.Then the nurses came in to give Jack a dose of Versed and Tylenol. Little did we know at that time that giving him that medicine would be the worst part of the day. It took all four of us (two nurses and me and Josh) to hold him down and force the medicine down. He HATED it. Once they got the versed in they told him the tylenol would be "yummy". When they started to force the Tylenol in he loudly informed them that it was in fact "NOT YUMMY!!" ;)
Once that part was over we picked him up and loved on him. Then the nurse practitioner came in to ask questions for his chart. It was about 4 minutes after the medicine went down when Jack's little head started to slide backward off of Josh's shoulder. He literally couldn't hold his own head up. Then he started to giggle. Silly giggles that I had never heard before. He was drunk as a skunk. We all laughed at him until we cried. He got drunker as the minutes passed and by the time the nurse practitioner left our room he was slurring his words and dropping every toy he tried to pick up. It was a much-needed moment of relief from the tension and stress where we all just watched him and laughed.
At around 7:30 a group of nurses came in to tell us it was time. Our family walked out to the waiting room and Josh carried Jack as they wheeled his empty bed back to the OR. When we got to the door- that was as far as we could go- they said it was time for us to hand him over. He was still very drunk and sleepy eyed but he looked up and reached for me. I grabbed his little limp hand and told him I loved him and would see him soon. Josh handed him to a very tiny doctor who could barely hold the weight of his limp-noodle body. They went around the corner and the doors closed behind them. I cried for a while in the hallway and then we went and sat in his room by ourselves for a few minutes while I got myself together.
Then we went to meet our family in the waiting room where we spent the next 3+ hours. We sat and sat and sat. Finally, after what felt like years, the nurse came out and said that me and Josh could go back now. We waited in his room and Dr. Law came in. He said that everything looked great. He was all smiles. He said Jack did really well and was resting in recovery now. He said they did have to coil one collateral vessel. But other than that it went well and Jack's heart was looking exceptionally good for his particular CHD. He said we had the official green light to move forward with the Fontan.
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{Collateral vessels are abnormal blood vessels that connect the aorta with the pulmonary arteries. The aorta is a blood vessel that carries blood from the heart to arteries throughout the body. Pulmonary arteries are the vessels that transfer blood from the heart back to the lungs for oxygen.
Everyone has collateral vessels, but they're normally small and not in use. They become enlarged in some people with congenital heart disease (heart disease that's present since birth). When a collateral vessel enlarges, it may let blood flow from an artery to an adjacent artery or it may carry blood downstream and then back to the same artery.
Collateral vessels can make the heart work harder and in some cases should be closed. These vessels can cause other medical conditions, such as myocardial ischemia, an insufficient blood supply to the middle muscular layer of the heart wall; congestive heart failure or the weakening of the heart; endocarditis, an infection of the heart's inner lining; stroke, caused by a lack of blood to the brain; and aneurysms, which are bulging or ballooning of a blood vessel wall. Collateral vessels affect children and adults and can be a congenital or acquired heart defect.
Cardiologist will often close collateral vessels as a interventional method to close venovenous fistulas, venocameral fistulas, coronary-cameral fistulas, aortopulmonary collateral vessels and more. Specialists in our Pediatric Cardiac Catheterization Laboratory close collateral vessels using a non-surgical procedure, called cardiac catheterization, and specially designed metal coils and plugs. The vessel closure takes about two and a half hours. In most cases, patients go home the same day as the procedure.
During cardiac catheterization a doctor inserts thin, flexible tubes called catheters into a vein in the leg or neck and threads them through the vein to the heart. Once in the heart, the catheters are used as conduits to place small metal coils or plugs in the collateral vessels. The coil causes a blood clot to form and close the vessel. Over time, tissue grows around the coil, forming a permanent seal.}
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Josh and I wanted in Jack's room around half an hour until a nurse finally came in and said that he was doing really great in recovery. She said he was awake and happy and was eating a purple popcicle. It was another 20 minutes or so until they wheeled him out of recovery and back to us. He was awake and happy to see us. He was still eating his popcicle. He looked so good. They told us he had to lie flat for 6 hours but that the procedure had gone so well that when the 6 hours was up we could take him home. :)
Josh went and got our family and they all came in to see him and bring him TONS of prizes. He got toys and books and puzzles and games. He was happy. He never once complained. The nurses came in and out taking his vitals and looking at his dressings. He was patient and brave. They came in to do an x-ray and said we had to leave the room. I stood outside the door and watched as he did every single thing they told him to do. He was so big.
We got to look at the x-ray and see the coil. It's HUGE. His little heart is so small and the coil looked giant in comparison but I know that it was necessary and will help his heart so I just had to accept it as a good thing. It will help Jack get the blood flow that he needs.
We really didn't think that Jack would lie flat even for one hour but he laid on that bed like a champion for SIX SOLID HOURS! We played with him and read to him and he watched Youtube videos. Time went by quickly. The crazy part was that he hated lying there. It wasn't like he was lying flat because he was satisfied. He didn't like it but he was so big and so mature that he knew he had to so he just did.
Where did my baby go? When did I get this big boy that lets doctors poke on him and lies flat just because we told him to? No tears all evening. Brave doesn't even begin to cover it. The only explanation for it was God. He was there and He made a way. And we could not be more thankful.
As always, a million thanks to everyone who lifted him (and us) up in prayer that day. We felt calm and peace and knew that God was answering the prayers of a multitude and we are forever grateful.
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