Friday, July 10, 2009

Heavy Heart

Oh where to start, where to start...Joshua had a check up this morning with his Cardiologist. Next month will mark his 2 year anniversary of his open heart surgery to build a wall between the top two chambers of his heart that he was born without. The absolute worst day of my life. Since then his doctor has been monitoring his Pulmonary Valve. It has an "obstruction", which basically means it is more narrow than it should be. The leaflets are also thicker than they should be, which means they do not open all the way. The leaflets work like a one-way door which keeps the blood going forward to go to the lungs instead of backwards, back to the right atrium. Sorry if this is getting too technical. There is a 50-50 chance this will need to be corrected by going in and opening up the valve.


So, this entire time I have thought that that is the only issue we are having to deal with an monitor. Oh yea, his Superior Vena Cava does not connect to the top of the right atrium like it should. It connects at the bottom. Bottom line: it does it's job. That's all I care about. It's just "wired" different. But I found out this morning that the blood coming out of the pulmonary valve into the pulmonary artery is swirling around in the "fork" of that area, causing it to enlarge. If it continues to enlarge, that artery can push on his trachea, harboring his breathing. It might not ever enlarge anymore, but it could and we have to watch him to see if he is coughing more, clearning his throat, or wheezing more than normal. It isn't like it could happen overnight and he can't breathe (whew!), it would be a progression. At the time I didn't want to find out what the course of action would be to correct it SHOULD this happen. But now after talking about it, I kinda want to know.


Here is a diagram of the heart that might help show better what I am talking about. Let me tell you, I have been spurting out cardiology info for the last 3 years that I never thought I would ever utter. I remembered the basic way the heart worked, but not the intricate details we didn't learn in school way back when.



I am not bogging myself with worrying since that does nothing at all. I'm just praying that it will just stay the way it is and not get worse. I know this is in God's hands, not mine. Sometimes as a mommy, it is hard to let go of control over my child's life.


I am just reminding myself that it could always be worse and this is not a life or death situation. But this is my reality. I was just taken back from this. I also feel like we fix one thing, then find out there is something else. I don't want him to go through another surgery. No matter how big or small the surgery is, it is scary to have your child under anesthesia.

Sorry for the lengthy post...some of this is therapeutic for me. It was hard for me when I was reading more about his heart problems when it was first discovered (he was 2 weeks old) because all of the information says that whatever the problem with the heart, it is due to improper development in the first 8 weeks of fetal growth. Some can be genetic, but most is just a mystery as to why it does not develop correctly. I dealt with guilt over that...since I was the one carrying him, I felt like I had done something wrong. I know that isn't sensible now, but that is how I felt.

On a good note for me (!), Joshua did great with the EKG, and echocardiogram. The echo requires him to lie down and be still, sometimes on his back, sometimes on the side. This time, both. He was really tired this morning for some reason, so I think that helped to mine and the tech's benefit. :) He was very still and watched a movie. It still amazes me what they can see through his chest and into his heart, all by sound waves. Crazy.

What I am asking from my friends and family (you, dear loyal reader!) is to please include Joshua in your prayers. My prayers are for his pulmonary arteries to not enlarge any further. My wish is for him to not endure another surgery.

Thanks to many of you for being there and continuing to be there for me thoughout this. I appreciate it more than you will ever know!

8 comments:

Deanne said...

I am sorry. I'm glad you're looking at the bright side, but it's also ok to be upset, disappointed, frustrated. Feel free to call me if you need to vent.

Jennifer said...

I'm so sorry! I am also glad that you are looking at the bright side. I love you and I love Joshua so please let me know if you need to vent or cry or whatever. It is scary and I will continue to pray that he will not have to endure through another surgery.

DACVPM study group said...

Alli! I am sorry sorry that you and your family are going through this difficult situation. I will use every wish I have forever to wish that Joshua won't need to have surgery every again. I love you guys. I will call you tomorrow. If you happen to be up late, call my cell. Love you bunches.

Angie S said...

I am praying and praying and praying! God is good and Joshua's heart will be healed!

edy said...

Allison, Joshua and you are both in my prayer.
Love, Edy

Becca @ The Texas Darlings said...

I am so proud of you to look through this and find a bright side.... I don't know if I could be as mature about it- I know that I would just want to "kick & scream".
But.
When it comes down to it, God is in control of sweet Joshua's heart. HE is taking such good care to allow it to continue to function in it's own way. It may not be the way it normally would, but it is working!!
God want to hear what is on our hearts, so go to him and tell him.
You & Joshua will be in our prayers as well!!

Take care sweet friend!!

~Becca

Marcia said...

Wow Alli... I am glad you are being so positve!! We are praying for ALL of you!!

Christie in Dallas, TX said...

Alli,
I'm so glad you posted about this -- not just for your own therapy, but so we can all be praying for Joshua.

I know that God thought about his life and his heart long before you did and somehow knew that this was the course you all would need to take. Sometimes God's "good ideas" kind of stink if you ask me :-) but it's amazing how they always bring us back to Him. And if we can see Him in new ways through our prayers and through our experiences, then we know truly what life is all about.

Praying for Joshua's healing that you and your family see God in a new way through all of this.

-Christie