Sorry for the late update! Been a little occupied today with Lil Miss. So as earlier said, we arrived early this morning and she had her brain MRI to start, which went well. Her Nurse Practitioner Holly came by around 9:20a to let us know that she was in the cath lab and he was to be starting soon. She would be back in once her gained access (or got in) her leg or possibly her liver. SO finally around 11a she stopped by and said he had been trying to get in all this time and finally gave up on her leg and was prepping to go through her liver. He had done this way previously and she has always done well. So....she would be stopping by later once he had started working. So after a few snoozes, homework and magazine reading, Justin and I were just chomping at the bit wondering where she was....it was 12:30 when she finally came in. She said, he was finished and would be in shortly to talk to us about everything and stated that he did not do any work on her. What?! Every cath she has ever had done, he has done "some type of work", whether it was a stent placement or ballooning of the artery, etc. So, we waited anxiously........
Her cardiac anesthesiologist stopped by shortly after and said she was in recovery and offered to take us over to her. He would send Dr. B in once he was completed. So, thankfully Jenna was relaxed and snoozing away. Moments later he came in to discuss her cath with us. He stated what we knew, that he did no intervention(work) on her this time. The stents he put in previously looked good and her lung looked great. Then he preceded to state that he was concerned about her right heart and its function. Based on his findings and echo, she has moderate dysfunction on her right. He said that her heart pressures were running really high(called pulmonary hypertension), no different from the past though. He said that even after all areas being open her numbers still were not going down. She is 90% systemic(compared to rest of body) and her number is around 70 all through her lung arteries out as far as he can see in the lab. So that number can be looked at like blood pressure reading he said and it is the top number. I am not sure, that part is confusing to me. Basically the arteries and capillaries waaaaaaayyyyy out in her lungs are the issue, which is what they call small vessel disease. Anyway, he said that he is concerned about her long term. He is not sure how long her heart can handle the load of pressures, since they are not changing. He said there are no other areas to be opened and he has no more options on his end :( He has told us this in the past, but always brought her back to check one more time to see if she changes. This time he would rather present her to the conference team to discuss her case. This is a group which meets every Tuesday and is comprised of multiple heart doctors, nurses and specialists. He said that a new group of doctors have joined the hospital, which he feels may have some other possible options for her. These include maybe arteries they could see doing futher surgery, either through chest or side or possibly replacing her conduit since it leaks a lot (this may relieve some pressure on her right sided heart). Also, he wants to discuss if there are any medication options for her pulmonary hypertension. Lastly, he wants to discuss if she would possibly be a lung transplant candidate. In the past, he has always said heart-lung, heart-lung but things are changing and they are doing lung transplants on their own now. Recently Cincinnati has brought in a lung doctor from Houston who is highly known in his field to pioneer the new program here. So, he wants to know if there are no other options for her, is this one? A little nerving to hear, but he wants to discuss every angle.
Justin and I quickly took a lunch and when arrived back upstairs, Lil Miss was awake. She was just chatting away as usual. Asking the nurses everything, where is mommy? where is daddy? can I eat? can I watch tv? She kept them on their toes until we arrived and then moved to us. So, she was very loopy from the medicine given and just kept talking silly. I just laughed because she was funny. It was a nightmare keeping her down for her four hours since he went through her leg initially but luckily it went quick. She was hungry almost immediately which is a good sign and ate mashed potatoes and gravy. Dr. B stopped by again later and we just quickly asked additional questions and just got his honest opinion on his thoughts. We asked point blank, do you really feel they will have other options for her next week? His response was, no I don't think so. But he wants to try, he doesn't want to be the only one involved in her decision of treatment. He wants others to be involved, which we do too. We always said that we would try every option we could for her, and take that chance at her life from her. He said he would never put us in a position which we are not comfortable, and if we did not want him to, then we would not bring the case to conference. We declined and said, no we want you to discuss her. I told him that I was upset and crying because she is only 6. This cannot be it for her. I asked when he wanted to cath her again and he didn't know.
So, the rest of the day was quiet, we had a few visitors and my cousin Wendi was nice enough to bring us dinner since she works here in Cincy. Nice to see family :) We are trying to settle her for the night but she is not having it. Hopefully she will calm soon. At this point, we are just going to see how things go. Dr B is very pleased at how well she is doing considering her situation. He wants to make sure her quality of life is good he said. We are just trying to take the situation in. Are we happy things went well today, yes. Are we happy with answers received, disappointed. Not what we hoped for, but this is life. We will take each day, one at a time with our little fighter. She is such a blessing to us.
THanks to everyone for the love and prayers!!! I will keep you posted.