Monday, August 20, 2012

Catheterization, Occulsion, and Good News

Jonas, Luis, and I piled into the car on Thursday morning, August 16th, for our trip to Miami Children's Hospital. After weeks of playing with rubber gloves and shoe covers, and calling himself "Dr. Jonas", he was excited to go.

We checked in without hassle, and made our way upstairs for pre-op. We discovered the team was running behind schedule with the patient ahead of Jonas, so we busied ourselves with toys and crayons in the waiting room.

Eventually the anesthesia nurse came in, administering Jonas with "silly juice".
He loopily swayed back and forth, saying "woah, woaahhhhhh" and slumping over in his dad's lap. True to form, I heard him chatting away to the nurses as they wheeled him down the hall, asking which direction they were going next.

Luis and I left the hospital for lunch, as we'd skipped breakfast in solidarity with the kiddo not being able to eat. The echocardiogram and catheterization take a total of 3 hours to perform, so we went to the mall and did some browsing to kill time.
We attempted to lighten the mood with a little game of air hockey, in which I lost horribly.

Updates came via telephone every hour, until we drove back to Miami Children's at 3:00p.m. to wait for him to return from the recovery area. Half hour later, Dr. Khan spoke with us about the minor repairs he made.

Jonas's heart condition lends itself to abnormal lung arteries, which Dr. Khan repaired with collateral occlusion, inserting two coils into Jonas's lungs to improve circulation and blood flow.

He showed us the scans of Jonas's heart and lungs, which look fantastic for a child with a congenital heart defect. There is just one minor narrowing of an artery, not narrow enough to cause concern.

It was explained to us that the final step of his heart repair is put off until he reaches 30 lbs. because (unlike previous repairs that utilize existing tissue) the 19mm tube that is inserted into the inferior vena cava will not grow with him. The tube must function just as well when he reaches 150lbs. as it does at 30lbs.

Because Jonas is slow to gain weight, (as are the majority of people with CHDs)he will likely be 4 years old, possibly closer to age 5 before the Fontan surgery.

After meeting with Dr. Khan, we settled into a private room. Jonas awakened groggy and upset, yelling "Nooooo, I wanna get outta here! I wanna go home!"
After some cuddles and reassurance, he'd fall back asleep for half hour or so before repeating the process twice more.

He finally stayed awake, watching "The Muppet Movie" and happily devouring a popsicle and some Gatorade. As the evening wore on, he repeatedly asked to get out of bed and play with his cars on the floor. It was difficult to make him understand that he had to keep his leg straight (6 hours total) post-procedure.

We wrapped his lower half in blankets, trying our best to keep him still and distracted. Around 7:30 he feasted on chicken nuggets, fries, carrot sticks and apple sauce.

By 9:00, Kris had left and Luis and I pulled out lounge chairs, scooting them side by side to watching "Breaking Bad" on the laptop while Jonas started "Cars 2" for the third time in a row. A nurse came in periodically to check his blood pressure and oxygen saturation levels. Around 11 we all fell asleep, virtually keeping to our regular routine (Save for Jonas falling asleep to television, which does not happen at home).

He only awakened once during the night, at 4a.m., asking for a hug from mommy.
By 7a.m., a new nurse had arrived, and we were up for breakfast with "Cat in the Hat" and "Curious George", again sticking to the usual routine.

Jonas was in a great mood, and finally able to get out of bed. We unhooked him from his blood pressure cuff, and he played with cars and legos on the floor for a few minutes, until it was time to go for an x-ray.

The x-ray went quickly, and Jonas was happy throughout. He followed directions well: Hold up your arms, look at mommy, turn to one side.

Back in our room, the residents came by for rounds. They asked me some basic questions about Jonas and his condition, surprised that he had no other complications or health issues. They noted that he is extremely verbal and alert; and, despite being small for his age, he's a fighter.

We spent time in the playroom across the hall from his room, awaiting discharge papers. By noon on the dot we were signed out and ready to go, and what a relief!

Just another adventure with the boy with half a heart. It's good to be home, and back to "normal", despite Jonas having some residual back pain, and a fear of having band-aids ripped off.

I surprised myself by remaining in a good mood. I never got anxious or cried, and Luis kept me in good spirits by being so supportive and loving.
Being able to stay with Jonas overnight made all the difference, I knew how he was doing and that he was nearby.

Tuesday, August 7, 2012

Happy Birthday, Lil' Dude :)

It's that time again. Tomorrow, Jonas will be 3 years old.
I am thankful for every single moment, every day:

When I'm snuggled up in bed with him, watching Yo Gabba Gabba on the laptop.

When I'm counting to 3 because I've already asked him several times to do something, and it's the only way he'll listen...because when I make it to 3, I'm holding his hand and guiding him to do it anyway, and he's much too independent for mommy's help.

When he's singing the alphabet, because no matter how many times we go over it, he still skips the letter "E", and says "KIM" instead of "K-L-M"

When he makes me take him to the potty in public, just to circle the toilet 5 times, sit on it and not actually go, but still wants to flush.

When he tells me: "I love you, mommy. You're my best friend, and you're awesome"

I have a thousand Jonas stories and memories in these 3 short years. I store them up in my brain the best I can, because they are precious moments with a child I couldn't be any more lucky to have. He's the sweetest, most easygoing, loving child I've ever known-and I'm not just saying that because he's mine.

He's a ray of sunshine, even when he's got a grouchy look on his face.

I cannot wait to see what this next year brings, and the one after that, and the get the point :)

Happy 3rd Birthday, kiddo! Let's celebrate another year together, and many more to come <3 class="separator" div="div" style="clear: both; text-align: center;">

Wednesday, August 1, 2012

Pre-Surgical Orientation: July 31st, 2012

We made a trip down to Miami Children's Hospital yesterday, for pre-surgical orientation.
A woman sat with a small group of children and their parents, explaining to us in kid-friendly terms what to expect during our upcoming visit. Jonas played with a toy thermometer, stethoscope, and blood pressure cuff. We were given a tour of the pre- and post-op areas, as well as the waiting room, and the recovery room on the cardiac unit where Jonas will be staying overnight. This was a really positive experience for him. He was sent home with his very own "Dr. bag", filled with mask, cap, tongue depressor, and other goodies to play with. He had fun playing dress up, calling himself Dr. Jonas. I know it will be different for him on Friday, when he's there as a patient, instead of a visitor. Returning to Miami Children's was a flood of emotions for me. I recounted our previous experiences to the guide, lump in my throat as I detailed our visits and his first two surgeries. As we rounded the corner to PICU, I was triggered with the memory of watching him being wheeled away for his first surgery. Just four days old, Jonas was being taken away from me. I pushed through the memory of my whole body heaving with tears, unsure of what would happen next. Friday's cardiac catheterization is a minimally invasive procedure. He's had it done before. It's not as bad as open heart surgery. This is all very logical and rational, but it doesn't stop the fear and worry. It doesn't quell the anxiety. I don't want Jonas to be afraid or in pain. I can only do so much to protect him. I will be by his side every step of the way. No one should ever have to go though multiple procedures, especially not a child as loving and amazing as my own. Today, we're going to snuggle. Watch cartoons. Blow bubbles. Because these are things I can control, and enjoying our time together is the best way to destress.