October 25, 2012

Cath #11....

So the last few days have been long and tiring......we started out at the hospital Tuesday morning at 6:30 ready to have this done. We have been anticipating it for weeks and hoped that things would go well. She had no idea why we would be nervous, it was just another heart cath to her. Her doctor had even saw us the day before and told us that he did not anticipate any change and felt like we were still on board for preparing for open heart. He had even made arrangements for us to meet the new heart surgeon (since Dr E was gone now). So we handed her off to the team and went for breakfast and waited.  We received a call about an hour in from Janie, the nurse practitioner. She said that he was having issues accessing her (getting into her artery and vein) so it would be a little while longer before he could get started. About an hour later she called and said he made it in, but only one leg (he usually does both because she has blown artery on one side and vein on another). And he had to go through her liver this time too because he had no choice. We were ok with this, because he has done it before, we just wanted him to get started.  So about a half hour after the last call, Janie called back. Dr B  had instructed her to immediately call us because he was able to get through the cracked stent he was not able to go through in the spring! He was thrilled and wanted us to know he got through and was placing another stent in to repair. He had thought for sure she would need open heart to remove it because it was previously mis aligned, but with going through the liver, he was able to have a whole different angle. Amazing! He was also stenting another area below this one, to help with flow to her left lung. We were so happy to hear this news, a little surreal, but great to hear. Within about an hour or so, her surgeon was coming through the door and the first words out of his mouth were "no open heart surgery!!!" Justin and I were both just like, what?! He sat and explained to us everything done and of course I just kept asking questions because I just did not understand how we went from surgery to not. But of course, this is Jenna we are talking about and she is driving this truck called her life.  So he explained because he repaired the stent, her conduit (connection to her lungs from heart) would not need replaced. It was only needing to be done if the area was not fixed, because it was being strained from the cracked stent. He was just amazed he slid right in, he could not believe it. We could not either. But of course, he always has a "but" in each conversation post cath. He stated even after all the areas being opened, he said her pressures should have come down, a lot. But in her case, they never moved. Still in 60s under anesthesia (normal is under 25 while awake). So he was disappointed. He said it just concludes what we always thought, but hoped not true. The areas of her arteries, waaaaayyyy out in her lungs, really small capillaries at the ends are very narrowed and closed. He said that in no way can he EVER get to them. At this time, he is not even able to see them on screen, everything he sees is wide open. So these are teeny tiny areas not even visual and he is not even sure how many they are dealing with that are closed and small because she has so many. He called it small vessel disease and it causes her to have Pulmonary Hypertension(high blood pressure in the lungs which strains the heart). He said that the only option to fix this issue (once her heart starts to decline in function a lot) is a heart lung transplant. Even those do not have good success and are not done a lot. He said that yes, research is growing, 30 years ago they could not save children like Jenna, they died. But he said I cannot say if and when they will ever be able to reach these area before her heart is damaged too far. He is happy with how she looks now, and again he says he wants her to live, so no sense in bringing her back soon for another cath, knowing there is nothing he can fix. He is not giving up on her, just does not want her to have to go through more unnecessary surgery. So we will return early summer for another cath, unless she would have issues before. So Justin and I are thrilled no surgery, but bitter sweet because it has been confirmed at this point, she will never be "fixed." News we always knew, but hoped would not be true. But she is doing well right now and we will take it, enjoy every day we have with her. And we look forward to many more :)

Jenna post cath

Being silly for the hour she was awake that evening

On Wednesday morning we arrived and she had done well through the night and we were going to be taking her down for her lung scan soon. She was playing with her student nurse(who happened to be a boy) so she was enjoying herself. Go figure. We went downstairs, came up and were prepping to go home in the next few hours. On the elevator ride back up daddy noticed that she looked a little pale. We thought, oh great, here we go. We got to the room and settled and within minutes she had thrown up everywhere. All of her dinner from the day before. So immediately, her entire team was in the room doing labs and ordering tests. Dr B came in and starting listening to her, said she sounded good but did not look so hot. So they ordered a chest xray and abdominal ultrasound. Her tests came back normal, so we hoped she just had an upset stomach. She slept a lot the day before, so we did not really notice any issues that may be brewing. They decided to watch her for the remainder of the day and go home the next day, just in case. They never take chances with her, she is unpredictable. So daddy and I stayed the night with her, since we already checked out of the hotel. The next morning her team said she could go home, yay! So we got dressed, signed papers and hit the road! She was happy to be going home, she wanted to pick up Bella (our dog).

We made it home that evening and settled in for the night. She was still tired from the procedure and trip, but I could tell she was feeling better. We were happy to see that she was improving. The next thing to get ready for was Halloween! She had decided way back in the summer she was going to be Spirderman and stuck with that decision, and she wanted mommy to be batgirl, yay for me! Pics to come!
Thanks for all the love and prayers everyone, I will let you know how she does!

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