Natalie's Options as of Today

One of the many doctors on Natalie's team came by Friday morning to visit us and tell us what the plan for now is. Okay so here is the deal...

Natalie is not having any more test run for now. They were going to go ahead with the CT Angiogram when she had the breathing tube, however she removed it the other night. There are a few reasons why they want to wait all based on the fact they are uncertain they can get the picture they want:

1. They would have to re-put the breathing tube back in and sedate her again
2. To take her to Parkland Hospital is a huge ordeal to not be certain of the outcome
3. The uncertainty of being off site even though it is attached to Children's

They are talking with Parkland and other doctors to figure out a solution on how to get a picture of the left coronary artery. The left coronary artery is the problem. They have not been able to see it in the other tests, so they are assuming it is extremely small. This is probably why the BT Shunt did not work the first time. An MRI is normally the best way to get an image of the left coronary artery, but that did not work with Natalie (problem child already). When they are able to get the image they want, then they will either confirm their options, have more options or narrow down the options.

Here are the options for now, they are still trying to come up with other options as well:

Option 1

Tuning up...To go back in with the BT shunt and widen the left coronary artery. Both of these procedures by themselves are extremely risky and to add them together makes it worse. Also, they are uncertain if she would even tolerate it after the experience last time. This is basically the last option for now...if she will not hold off for the other two options.

Option 2

Try to hold her off for the Glenn Shunt, roughly about two months or so. The Glenn Shunt and Fountan (procedure after Glenn, about 3 to 4 years of age) are procedures that to not fix her problem, but by her time before a heart transplant. Now that could be 50 years or 5 years, who knows. There is still a risk she might not tolerate the Glenn, however there is that risk with all these procedures and options.

Option 3

Heart Transplant (this is the back up-back up option)...I am going to talk with the transplant team this afternoon. We are going ahead and putting her on the list. For a baby her size, it roughly takes about 2 months, which is the same length of time as the Glenn waiting period. Now this could be sooner or longer, who knows. The reason for the heart transplant list, is they do not want to get another month down the road and realize this is our only option and then have to wait another few months to get further on list. The risk with a heart transplant is right typing, her not rejecting it, etc. A heart transplant could last 2 years or 10+...we just do not know.

I am a bit overwhelmed right now, but I just feel blessed we still have options at this point. They did not come in and say we are sorry there is nothing we can do, so that is good news.

The doctors and nurses have been great the last few days. They have really set down with me and explained everything a bit more. I actually think I finally understand her condition and the various options, the levels of risk of each and the outcomes.

So for right now, she will be staying in ICU to be monitored and to grow. Yes, I know that is another couple of months in the hospital. We have been joking around that ICU is the concierge floor, because there is one nurse to two patients. I think or should I say I know Natalie is going to be high maintenance, but who can blame her with all she has and will go through.

Natalie has had a few major eposides in the last 24 hours. When I say eposides, I mean her oxygen level dropping to an extremely low level. She now being fed only by her feeding tube. She seems to sometimes get irrated when fed by mouth and when she get irrated her stats drop. They did an echo on her earlier this morning and we are still waiting for the official results. We should know more this afternoon.

For me the hardest part is learning to balance my time between Natalie and Carter. I feel guilty when I am at the hospital and not with Carter and vise versa. I know both of my children are too young to remember any of this. I just sometimes wish I would not remember it either, but I know there is a reason for all of this. I am just going to hold on to the wheel and continue to let God drive.

I know this a lot to take in, so if any does have questions, please feel free to call or email me...I may not pick up right away but I will call back. I can not use my cell phone in ICU, but I can email.

I would like to ask everyone to be praying for the doctors to find a way to get the image they need of her left coronary artery, this will help us proceed better and for Natalie to continue to behave with her stats.