Not news we wanted to hear......

Hello everyone,

I am so sorry that I am just getting the resuslts of Jenna's cath to you. Yesterday was a very looooooonnnnnnggggg day. Justin and I are both exhausted and so glad that these last few days are over. I have been trying to think of the words to say to everyone about how I feel at this point. Jenna did very well with her cath. After I previously posted yesterday, her cardiologist came in and talk to us for some time. He did not exactly have the best of news, but he did say that Jenna did very well in her procedure. The conversation began with good news...her pressure levels on her right side heart (goes to her lungs and is supposed to be lower than left side which goes to her body) have dropped since her last check by about 15-20 points. This is a good sign that her VSD and ASD holes are doing their job in relieving pressure for her. Her cardiac output and how well her function is at this point is really good. He is very happy with that. Her conduit which replaces her pulmonary artery looks good as well. Sooo..on to the news which we did not expect to hear. He told us that on her right side lung where he placed three stents previously, the artery had basically "blown" it was non functional at this point. He said that at some point since last July, the stents fractured apart and separated and then the blood clotted together. So, the artery was a good size that helped this lung and now no longer works. The other areas which give blood flow on this side, are so small (capillary size) that they are not able to be opened. So at this point, the right side is done. Now, on the left, she had two veins which came off her conduit that went down her lung, narrowed and he placed a stent there, and as he went down, he located a collateral artery(never seen before) which connects off her aorta. There are two places which are closed off and he hopes the next time we come to balloon or place stents at these places. So, past these couple spots that need to be worked on, he no longer has anywhere to go in regards to opening any bloodflow for her. He said that at this point, she does not have blood flow to certain portions of her lung at all and if he could estimate, she has about 1/2 function in each lung, basically she has 1 lung to live off of. He said, that her issue is her lungs(which we knew) and not her heart; however because this is the case, over time because there is so much pressure in her lungs, it will eventually keep going back to her heart and over time cause it to fail. He said that unfortunately Jenna's life will be cut significantly shorter than most people. He said that he feels that it will be years before her heart will start to fail, but he could not say that it would be 5 or 15 or 20. Who knows, every child is different. He said that at that point, her option would be heart-lung transplant. We have had this conversation with him previously and I do not want to go there at this point, we will cross that bridge later. Since her function is really good at this point, he is happy with her. He is just worried about the long term life for her. He wants her to be able to enjoy life, be a child, have a break from everything. He says that he will never give up on her, but if he has nothing to fix, there is no where to go. He brought her heart surgeon in during the case as well, to look at her and he did not have any options. We later talked to her surgeon about his thoughts and he said that at this point, he is not able to do anything for her surgery wise unless her conduit needs to be changed. He and the cardiologist are disappointed in her situation at this point. They were hoping that she would have more options in helping her, but at this point there are no choices.

After her cath she was transferred to CICU and had to lay flat for four hours. This was awful, she was soooo ticked off. She was not allowed to have anything to drink because her G tube was finally able to be put in, but they were not sure it was in place. Because the test to check she has to move around a lot, she could not go until after her four hours. So after all that, she finally got something at 8pm. She was so excited she chugged and then threw it up. Once settled, she passed out for the night. So we decided to get some rest as well. Considering everything we were still able to sleep because of complete exhaustion.

This morning we came in, she had a great night, slept all night. She tolerated her feeds, came back down on her oxygen levels. He took her off oxygen, which is great, started her on aspirin because of her stent and sent us on our way. We were discharged around 1pm, took Jenna out to lunch and then headed home. We made it back around 6:30pm. She is settled in for the night, and hopefully over the next few days catch up on her rest. Hopefully mommy and daddy do to.

This situation is sooo hard to hear as a parent. He will continue to monitor her and watch for any changes and her function and possibly down the road by a miracle, maybe other arteries will show for him to help open and improve her function. He is happy with her quality of life right now, she is great and wild and fun, just like a child should be. But he wants us to enjoy life with her because of her situation. He gave us the option that we are allowed to go for a second opinion, but as we see it, why? He is one of the BEST in his field in the country, very honest with us and maybe someone else can try to find more, but is it enough to improve her that much? At this point, Justin and I feel like we have received the BEST CARE possible for Jenna, they have been there for us, saved her life more than once, answered questions, listened to us and told us the truth. There is no gray in hearts, only black and white, this and that. So yes, it is hard to hear as a parent, but it is reality for us and Jenna at this point. Justin and I have cried numerous times since yesterday and asked ourselves why more than once. But once we have adjusted to this, we are going to give her the best life we can. We have already tried to do this, but are going to try harder. And enjoy every second we can. We love our babygirl soooo much and cannot bear the thought that one day we will lose her. My heart aches so much and at this point is not sure how to handle this. I am trying hard to be strong, but at times it is hard.

So at this point, she is doing well. But we ask, which we know everyone has continued to do so is PRAY PRAY PRAY for our little girl. We thank everyone for all the love and support you have given and could not ask for better. We will continue to enjoy everything, together with each as a family. This week has been so hard. Thanks again to everyone, I just have ran out of what to say. Love you all.

Jenny, Justin and Jenna