Wait To Be The Wiser?

Rosemary's cardiac catheterization went very well on Tuesday. Couldn't have gone any better. There were little to no changes from last year's cath. I was elated with their findings. So when I asked if there was a physiological explanation for her recent episodic O2 desatting issues, the doctor explained that it could have been that she was cold and clamped down a bit, or the pulse ox monitor that was used could have been giving a reading that was off. Not likely, but possible. That being said, I was happy to hear that her numbers looked great. So we're good, right?

The doctor also explained that because Rosemary had failed the Fontan once before, she is at an even higher risk for an already high risk procedure. If we wait until her status changes, pressures increase, sats drop, etc. we will increase the risk that much more. Their recommendation is to reattempt the Fontan while she has an optimum situation.

I can't even explain what this feels like. But I'm going to try.

Rosemary has came close to death several times. Each time, she has turned herself around and fought back to be here. During the last 6 month stay at Children's in DC in 2009 when she was going through Fontan failure, they had taken her completely off of GI nutrition and put her on TPN (Total Parenteral Nutrition) through a IV/PIC line in her arm for 6 weeks. That was done as a last effort to determine if it was her GI system or her heart that was contributing the chronic pleural effusions. It was her heart. Watching her struggle to breathe, deal with constant pain, having to get new IV's on an almost daily basis, deteriorate daily and fight to maintain anywhere near a good quality of life, took a mental and spiritual strength I didn't know I had. But Rosemary was and is even stronger than I, she was the one going through the physical torture of a failing heart. It was, by far, the most difficult period of our lives.

So having to think about putting her through that again, I think you can understand why I just don't want to do it. I can remember her surgeon saying that some kids can stay at the Hemi-Fontan/Glenn status up to 10 years. What if Rosie is one of those kids? What if I make the decision to do it and I unnecessarily put her through that hell again? What if we face the effusions again, a failing heart, the possibility of accepting she could die...again? What if her little heart and body just can't take it?

Don't get me wrong, she is bigger, stronger, and the will of this child to live (head down, hands in the air)...let's just give that one right to the glory of God. Her heart had a unique anatomical situation where the atrial septum between her right atria and right ventricle was very narrow. It is now wide open, thanks to a little trim during the 4th open heart and the overall natural growth of her heart. So that may work in her favor to allow for a successful Fontan which, in the end, will allow her to grow into adulthood. So I want her to have success this next time around for obvious reasons.

The other side of this is that we wait. But if something does change in her heart that increases the risk, it puts greater odds against her once again. We are seeing the changes in her already within the last year because of growth. More body tissue means more material to perfuse with oxygen, which taxes the heart a little more with weight gain. She's definitely compensating for this, most of these cardiac kids can. But I am so scared to push it beyond a point where she puts herself in danger. As many CHD parents out there know, it's every doctor's best guess at how your child will respond to a procedure. The only way to tell is to do it.

We have some time to think about it. Nothing is pointing at an emergent situation, but we meet with her cardiologist on the 23rd to discuss a plan for a possible Fontan #2 this summer. I am avoiding this like the plague. But I know that eventually, she will need this. She is already significantly out of breath just walking room to room. She still plays, runs, laughs and has an amazing quality of life right now. I just want to keep her healthy and happy and comfortable. Which, again, is why I am reticent to move on this.

I wish a little angel would come down from heaven and tell us what to do. I'll just have to pray and trust that clarity and the wisdom of whether or not to wait will come to us. If there is anyone out there who has experienced anything similar, please contact me ASAP. I just want to gain the most knowledge I can before contemplating any of this.

We'll keep you posted. Thanks for reading.

Brakes...Gas...Brakes..Gas...

I have a new surge of hope today because we have received some news that we DO have options for Rosie that DO NOT include heart transplantation at this point. We can breathe again.

Her surgeon here in DC met with me today and explained that he didn't feel that she would do well with a transplant right now and that reverting her back to her Hemi-Fontan may give her the relief and benefits that she needs. He also explained that at some point down the road, it is still possible that we may have to face the decision of transplantation and that no matter what we decide, there is still no guarantee that it will fix her problem. I am still hopeful.

Yesterday we had sent a packet of 9 discs and about 50 pages of info back to New York Presbyterian Children's Hospital where she had her first 2 surgeries. The intent was to get their opinion on whether or not she was a candidate for a transplant. To my joyous surprise, her cardiologist there said that no one on their team thought she needed a transplant at this point and that they thought they could help Rosie. They would like to try to do the trim back of the tissue in her atrial septum to reduce the pressure gradient that they feel has been causing her Fontan failure and pleural effusions.

We now have two solid surgical options that do not include transplant. We are waiting for the two surgeons from DC and NY to confer on what they think would ultimately be the best choice for Rosie. I have a gut feeling we will be going back to NY. My hope is that we can do whatever repair is necessary without relocating, but I am willing to do whatever it takes. This also means that we would be transported to NY as early as Sunday, which Columbia Presby and DC said they would help set up ASAP.

I would be relocating myself and Rosie to NY for at least 4 months. I have 2 other children to take care of and this makes it very hard for me and my family. The stress of not having them near me or being able to see them as often will be the worst part. Deciding to go to New York will include my sister and parents carrying much of this weight because they are currently loving and caring for my other two children and would need to continue to do so until we return. I am so blessed to have this option in the first place, to be able to have peace of mind about making this decision knowing that my children will have my sister, brother-in-law and parents to take the best care of them.

So here we are, about to embark on yet another set of decisions for Rosie. We are trying to give her a better option than what she has now with the best possibility for a better quality of life.

It's changing every day. Stay with us. Stay tuned.