A post-cath letter to my Elijah

Dear Elijah,

AAaaaaaaaaahhhh. That's me breathing a huge sigh of relief about being done with your sixth heart cath. Once again, I am so glad to have another thing behind us and once again, I AM SO PROUD OF YOU, ELIJAH.

Yesterday morning as we sat with you in the pre-op area way before the sun was up, I was able to see a side of you that I have never seen before. For the first time ever, you did not cry when the nurse checked your oxygen saturations, your blood pressure and your temperature. Daddy and I shot looks of happy confusion across the room at each other because normally you cry through all of that. You are growing up!

You were very friendly with the nurses and doctors who came in to check on you and get you ready for surgery, but that is nothing new at all. You played hard in that little room of ours, driving your car around, blowing bubbles and even sitting on a blanket on the floor for a foodless "picnic."

When it was time to take you back to the cath lab, we decided that Daddy would be the one going into the room with you. I'm sorry I didn't go in with you, too, but I hope you understand that it is really difficult for me to see you being put under anesthesia. I did it once and it scared me to pieces!

I squeezed you extra tight in my arms all the way to the cath lab, and you knew something strange was going on because you kept saying, "Home!" into my ear. It broke my heart, Elijah, and that is what I cried about after I handed you to Daddy once we arrived at the OR door. You became very afraid when the doctors opened the doors and you could see into the big scary room, so I quickly gave you a big hug and handed you over so you wouldn't be scared for very long.

Daddy and I waited in our usual waiting room while Dr. G did his heart cath magic on you. We received a few update phone calls from one of your nurses and every time we talked to her she said you were doing great. You always do!

The procedure went a lot more quickly than we expected. It only lasted three hours and Dr. G didn't need to do much "work" on your heart like he thought he might need to. This was great news!

The pressures in the right side of your heart are about double that of a "normal" heart, but that is exactly where they were at during your cath one year ago! This is amazing and totally unexpected. The stent in your pulmonary artery (that Dr. Moga placed during your second open heart surgery) is definitely creating a narrowing of that artery, but not to a degree that we should be immediately concerned. It is something we will keep an eye on when you get your echocardiograms in the future. Your bovine valve (also placed by Dr. M during your last OHS) is a bit narrowed at the top, but is otherwise functioning perfectly and is also showing no immediate concerns.

These are the two main things that will need to be fixed eventually during another open heart surgery. We thought that after this cath, OHS #3 would be on the horizon, but it is not! Everything is growing fairly well inside of you, so we just continue to wait. The farther out the next surgery is, the better! We don't even go back to see Dr. G for another six months! We really didn't expect this level of good news at all, so we were all (Dr. G included) very very pleased with the cath results.

Once you woke up from your surgery, the nurses wheeled you in your bed over to us and we met you in the hallway. You were very grumpy (totally understandable) and scared and DID NOT want to be in a hospital bed. You didn't stop saying, "UPUPUPUP!" until we got you into a room and had you on Daddy's lap.

That is when we noticed that you were really struggling to breathe, way more than we have ever seen before after a heart cath. You had stridor (which you typically get with croup) and your belly was retracting pretty badly, showing that your lungs were working extra hard. After two hours of this, and crying non-stop on top of it, your anesthesiologist ordered a racemic epi neb and an IV dose of steroids. This helped you almost immediately.

A short while later you started to calm down. We spent those first few hours doing everything we could think of to soothe you but nothing worked. You wanted OUT OF THERE and anything less than that was not acceptable! Once you realized that we weren't going anywhere, and once you felt a little bit better, you laid in Daddy's (or my) lap and dozed and/or watched tv.

I thought it was funny that during your most stressful times (whenever a nurse was touching you, or even within ten feet of you), you called out for "Dushin," which is your word for "Junction," which is your current favorite tv show. You didn't want Mama or Daddy, but you did want DUSHIN!

Every time I asked you if you wanted anything, you would say "NO!" (said without the N) and shake your head.

"Do you want apple juice?"
"OOhh!"
"Do you want to lay in bed?"
"OOhh!"
"Do you want a thousand gifts from Santa?"
"OOhh!"

One time, though, one time, you said YES to something! Do you know what it was?

"Elijah, do you want to lay on Mama's lap?"
"Ess!"

That made me feel sooo good. Even though you called for your favorite tv show during your very scared and stressful moments, at least you said YES to wanting to be close to me. I hope that never changes.

And speaking of that, you literally barely fit on my lap anymore, which makes me very sad. As much as you insisted that you be held yesterday, I just don't know what we'll do when you are no longer holdable. :( I don't like to think about that. I am just so happy that being close to us is comforting to you.

Luckily we didn't have to spend the night at the hospital, so we all went home together in the evening. You were so happy to be home (us too)! You gobbled up a ton of food from not having eaten in almost 24 hours, and then went straight to sleep.

Unfortunately, some of your airway issues from earlier in the day came back once you had been sleeping for a while. Daddy and I got you out of bed and gave you another neb and put you back to sleep. My worried mama brain didn't want to be too far away from you, so I decided to sleep on the floor in your bedroom so I could hear your breathing and know if you needed help.

You had no more issues through the rest of the night and this morning you were doing great! You have a little cough and a bit of a hoarse voice, but that will go away quickly. We also expect you to have a slight fever for a while because of the five coils Dr. G put inside of you. I forgot to mention that! You had some (more) arteries (MAPCAs) supplying duplicate bloodflow to your lungs, so Dr. G coiled them off. You now have around 20 metal coils dancing around inside of you! Crazy!

So, our day at the hospital is done, but my emotions are out of control, as they always are The Day After. I really think that the older you get, the harder all of this gets. You understand a lot more now than you ever have before, so we can see genuine fear in your eyes and that is not fun at all.

There was one point yesterday when your nurse was in the room and you were on Daddy's lap and you just stopped crying and closed your eyes as tight as you possibly could. It was like you were wishing all the bad things away and pretending that you were at home in the safety of your bed. I will never forget that moment because it broke my heart. I wish you never had to experience the things you have had to and will have to experience and that you never had to wish yourself to another place.

You are such a brave, strong boy, and Daddy and I are so proud of you. I hope you always know that! We love you very much.

Love, Mama