Isaiah's Catheterization and Next Steps for His Heart

Last Thursday June 11th, we left our house before the sun was up and drove the 90 minutes to our Children's Hospital. It was Jay, Eliza, Ellie, Isaiah and me. We took two cars knowing that Isaiah would likely stay the night (which he did).

After we checked in with insurance and wrist bands, we went upstairs and nobody was at the desk for the Heart Center. We were told to go to the intercom to ask for entrance into the pre-op room. Uh...where was that? Thankfully, after walking around a few minutes we found someone else going in there and we walked in and said "not sure if we are in the right place?"...they already knew who we were, didn't even ask our name and just took us to his room.

I had written up a Care Plan for doctors and nurses to read and follow for Isaiah, knowing that medical anything was traumatic to him and attempting to be his "voice". The nurse right off the get go said she had read it and would give him as much space as needed. I think she did pretty well, until following the cath when he was waking up and I had explicitly said that I was to only feed him..she gave him a bottle.. but I politely took it out of her hand and that didn't happen again.

All the doctors and nurses came into to examine him, which I think was the worst part. It is a training hospital so it was at least 5 people who did this, which I feel was not necessary and may push for that not to happen next time. By the 4th person he was in tears. I don't think the Fellow AND Nurse Practitioner need to listen to his heart, when the Anesthesiologist, Nurse and Cardiologist all MUST.

They took him back to the cath lab, Jay got to carry him until he was asleep. They were very good at updating us every hour, very promptly too. The first hour we were told took all that time just to get the IV in and into the arteries. They said his veins were very "spidery" and that is normal with heart kids. Poor guy had 9 attempts on the left side.

 The 3rd hour we were told they were ballooning the left pulmonary artery, not once but twice to see what they could do. Then just 30 minutes later they said they finished up. I had a gut feeling that they weren't able to complete the procedure since it ended so quickly, but hoped I was wrong. The doctor soon came out with many pictures and explanations. He explained each photo step by step and answered our questions as we went along.

The first major issue we saw was the size of his right chamber. It is approximately 4 times larger than it should be, which seems to be a secondary issue due to 2 other major problems...the pulmonary valve leakage (from his original birth defect of Tetraology of Fallot) and a very narrow left pulmonary artery. It was less than 1 mm wide when it's counter part is 8 mm wide, to give you an idea of what it should be. 

Back to the hypertension on the right chamber: It is so large that the "pump" is not pumping well at all. The doctor called it stiff and sloshy. They put die into the heart with the procedure and you can see on the photo that it just pooled into the bottom, as the heart could barely pump it out. 

The valve that takes the blood out of the right chamber has already been "repaired" in China. I say this as it really can't be repaired, it needs to be replaced. But the doctors have figured out a way to make the heart work, it seems, without replacing it, until the child is much older, finished growing and can have a valve replacement. This is what we originally thought his condition would be like. All of that should be successful in Tetralogy children, but only when the other aspects of the heart are doing well. Isaiah has a very narrow pulmonary artery going to the left lung. Like I said before, it was less than 1 mm when it needed to be close to 8. So they ballooned it up to 4 mm and had originally planned to put a stent into that artery to get the blood flowing to both lungs and take some pressure off that right chamber. Upon going in there and seeing how sick his little heart was and just not functioning properly at all, they realized it was not just an easy fix. In fact, the doctor said it was heart failure. Huh...Did I just hear that? Yep, "heart Failure!".. What that means is that simply his heart is not pumping like it should and it is in a dangerous situation. So there was no stent put in, there was a small biggering of the artery..it was up to 2 mm after the procedure. 

So now I know why my instinct kept telling me, even from our first nights with him when he was breathing heavily, coughing, whining and restless, that it really was due to his heart. I didn't listen at first, just "thinking" it was adjustment, grieving, fears etc. But as time went on, I did start to ask the doctors about it. I was told by our pediatrician and cardiologist that it was not because of his heart. I trust our doctors and have a wonderful relationship with our ped. But they were both wrong. I have a good friend who let us borrow her son's pulseox for a couple of days. That is when I monitored his sleep, because of a very minor cold was putting him into screaming a lot through out the night and he just hadn't done that before. I really felt the nudging that it was more serious than just fears or grief. His O2 levels dipped down into the 70s and mostly hung out at low 80 and 81. So now, the doctors agreed he needs to be on O2 at night and as tolerated during the day. 

So as far as we know now we have two options:

They can go back in through the cath and do what they originally planned, putting in a stent. Or they go straight to open heart surgery and replace the pulmonary valve so it works properly, not leaking, which in theory should make the blood flow more easily out of the chamber and into both arteries, even forcing the small one to open up more and in the end taking the stress off the heart and not causing hyper tension on that right chamber. There are risks with both, probably the valve being the most risky. If his heart wasn't so large with little proper function on that right side, it would be an easier surgery. But that raises the risks greatly. Once he has the new valve, it will need to be replaced as he grows. For that we are not sure how often either. But from what I understood, if they choose to do the balloon and stent, it very well might close off, stunting the growth of the artery altogether or it might not take the pressure off the right chamber and he will end up with surgery replacing the valve anyway. 

We needs lots of wisdom as to what God wants us to do. We might seek a second opinion. We are "supposed" to hear something next week. The cardiologist has been great about answering my emails. He just said this week he was talking to several people about what is best for Isaiah. But it sounded as if he was thinking the replacing of the valve needed to be soon and was our only option.

Last week I had some mother fears. I am processing them with the Lord's help and prayers of others. I don't want our little, precious boy to go through this anymore!! I know God has called us to this and called us to walk alongside him as he faces this challenge. Many times as a parent we forget it is our children who are the ones who are really brave and have the courage. They are the ones walking through their tragedy. This little boy, abandoned at 6 months of age, has been through so much in his short life already. I don't want to figure out God's reasoning, I just know I trust His sovereignty. Who am I to complain in my heart at all that I am walking this path?. No, I am thankful today for each breath he has and heart beat his heart makes. I am realizing more today that life is a gift and we should treasure it all the more. If the Lord allows us the privilege of walking along this journey with our new son,  into the world of multiple open heart surgeries, daily oxygen, etc..so be it. I am so ever thankful that I get to be mother holding his hand, wiping his tears and teaching him to seek the Lord through it all.

 Pre-cath...just waiting and getting examined...again and again and again...

 Not the greatest picture quality, but here is my corny husband all geared up to take Isaiah back to the cath lab. Isaiah was given Versed at this time to help him relax. And he was laughing at his Daddy quite a bit.

 Ellie being treated like Royalty and practicing her little wave from the wagon rides with Daddy, while we waited the 3 1/2 hours for Isaiah to be done.

 Isaiah upon waking up for the cath..He had to lay flat for 4 hours.. he drank 2 bottles of water and one bottle of apple juice. Poor guy was so thirsty, but we were being careful for him not to throw it up.

 Sweet Isaiah today, with smiles even wearing his O2. He knows it makes him feel better.