Saturday, December 31, 2011

Happy New Year!!

I just finished filling in my new calender for 2012 with all of the important dates to remember for the next year. I couldn't help but think about what this next year will bring as I reminisced about 2011 and all the surprises that took place last year. I'm hoping for a wonderful year!!

We had a FANTASTIC Christmas!! I tried to let down my hair down and let Matthew and the entire family enjoy each other and our celebrations with one another. Matt had the entire week off which was the greatest present of the season!! Matthew jr. has not seen, and in some cases, has not even met some of his cousins. Because things are a bit up in the air with Matthew at the moment, I wanted to give him the opportunity to see his cousins and Aunts and uncles while they were in town. He LOVED it!! I think he felt the love from so many relatives he has not seen, literally, since transplant!

Matt and I both commented that we feel very blessed that Matthew was able to stay healthy through the Holidays (especially because I got a stomach bug myself). We are grateful for the opportunity that we had to enjoy this Christmas season with those that we love.

The plan for Matthew as of now is to wait. It can be hard at times, but I've tried to take it one day at a time and enjoy each and every day I have with Matthew and my other boys. Life is fragile, this much I've learned. Each day with those that we love is a blessing! Usually I'm brought back to reality after clinic days or other visits. I'm reminded of how sick Matthew's heart really is- even though he's not showing it much yet. I'm reminded that things could change at any given day depending on an echo or other clinical findings. Right now, the transplant team is giving him time with his current heart until the coronary artery disease takes over and we are forced to move ahead with another transplant. This was hard for me at first because if re-listing him is what we will eventually end up doing down the road anyway, I wanted to re-list him while he was seemingly healthy so that we could have time for him to get a new heart. I understand the dilemma. Matthew's heart is sick, but he's doing well. He's happy and he enjoys life. There is no guarantee with a second heart transplant. Things could go good, or things could go terribly wrong. And so, we hope and we pray that his wonderful little fighting heart can continue to triumph for as long as possible. Matthew's birthday is approaching and I am hoping that we can make it to his birthday on January 24th without any heart drama!

Love and happy thoughts to you all for a wonderful 2012!!!

Friday, December 2, 2011

To celebrate, or not to celebrate?

Matthew had his follow up heart catheterization to assess his coronary arteries yesterday. He tolerated the procedure really well which was a relief. Matt and I were paged to the cath lab where we talked with Dr. Everitt and Dr. Gray. Great news.... it seems that the coronary artery disease has not progressed any more and has even improved a little bit. I think this information was the best case scenario we were hoping for yesterday. However, it was unexpected. After these past two months, Matt and I had mentally prepared ourselves for bad news. What a wonderful surprise!! Matt and I enjoyed the day with Matthew together (we had to have Matthew lay flat for 6 hours post cath because they accessed him through the groin).

When we were just about to be discharged from the hospital we went to the cardiology clinic to complete Matthew's echo. When we got back to Matthew's room, Dr. Molina, Dr. Mack and Emilee were there reviewing Matthew's chart. Dr. Molina told us that Matthew's biopsy report had just come back from pathology and that he was experiencing some mild cellular rejection. Also, on Matthew's echo he had a pericardial effusion (fluid around his heart) and he has a heart gallop again. So...... our hours of celebrating were short lived. The transplant team is all going to get together to discuss what the future care for Matthew should be. Dr. Molina wants another pathologist to review his biopsy for a second opinion. We are waiting on a few labs to come back to hopefully shed some more light on how we should proceed.

I will update you when I get more information. For now, we are relieved to know Matthew is in good hands. We appreciate all that his medical providers do to help Matthew. He is a tricky patient to figure out. We are grateful for the transplant team and trust them completely. Thank you for all your prayers. We love you all!