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Tuesday, June 16, 2009

Some Symptoms

Over the past week or so, we have noticed Gabriella's breathing changing. She is getting more easily tired doing basic things like playing cars with her brother or cleaning up the toys. I brought this to the nurses attention Monday morning when she called us and she fit us in for an EKG and echo later that afternoon. We went in and got the scans done, and Gabriella is really becoming a pro at laying still for the tests!

We got a call back from the nurse today with the results. It looks like the muscle function hasn't changed, but there is some additional leakage from the mitral valve that could be causing additional fluid in her lungs. They are putting her on a diuretic to help relieve that additional fluid. Of course, that poses a who new set of issues to watch for like 'accidents' and low potassium.

I spoke some more with our nurse about the progression of Gabriella's condition and the delay with the other hospitals. Turns out Stanford has yet to review the cath disc sent to them, and Loma Linda is just waiting on their opinion before they proceed with seeing her and placing her on the transplant list. Naturally, the nurse and I are going to start pushing this chart review because one symptom and change in her heart can lead to another and another. We were blessed to find this condition without having to experience a traumatic episode to discover it, and that's the way I want to continue her care. I want this whole process of review and transplant and recover to all be precautionary. We found she has a terrible diseased heart without a heart attack, ECMO, or even losing her.... and I don't want to even consider one of those things might happen because of delays.

We go back on June 26 for another Echo, and PJ is getting scanned, too. That will be after being on the diuretic for a week, so hopefully we see some improvement in the mitral valve leak.

I, on the other hand, have loved every second of being home with my babies. I have been here with Gabriella and able to monitor every breath and action she does. I know how hard it would be if I was away from her over 40 hours a week to see these changes. Despite my loss of income, we have been blessed to have all of our June bills covered and have yet to even consider using any of her fund to help us with anything. Though I have total joy being with my kids and am absorbing them as deep as possible, the internal emotions and issues I am having are overwhelming. It is indescribable really.... the intense happiness and intense struggle at the same time. I know these feelings are only going to intensify as things move on, but I know God will place people in my life to get through this, as he already has. I have been really blessed over the past couple weeks to have some amazing girls reach out with love and support and thank them for keeping up on me!!

Hopefully now that I am getting my house into order I will have more time to update and blog!


Megan@SortaCrunchy said...

I think it has to be SUCH a blessing that you are with her every day now - ESPECIALLY to catch things like this that come up.

I cannot wrap my mind around the internal struggle you must be going through on an hourly basis. I just keep erasing things here because I just don't even know what to say.

Love you guys. Thanks for keeping us in the loop.

Corey~living and loving said...

hugs! I simply can't imagine the worry of waiting, and the frustration with delays.

I'm thinking of you all.

Tina H said...

Sending you my hugs, prayers and support! You're soo lucky to spend every single second with your kids--glad to hear you are totally enjoying it!