Lucky Number 13.......

Hi everyone-

Sorry for the late post! I have finally been able to get on to the website to post via my laptop which is way easier.....So this morning Jenna went back for her heart cath about 10:30am.  She was crying when we left her, but quickly recovered with the nurses when they began to play Frozen on their phones-haha. Dr. H(cath dr) was able to access into her around 11:15a and completed her case by noon.  We were so shocked-this was her 13th cath and all the times before this was by far the quickest one.  During the surgery he was only able to look at her "diagnostically." Which means basically he just reviewed her numbers and tried a couple of medications to see if her vessels would respond.  There were no areas to open or place stents in at this time.  In her previous caths she has ranged in the 70s for her pressure numbers in the right ventricle.  When he looked today she was about 60. So, there was some improvement, which to him he feels that it is possible that the medication she has been taking has helped a little.  He said that he tried giving her nitric oxide(which is the same as the oral med that she takes to see if she responds), which she did in one area.  He said that she does not have blood flow to all areas of her lungs so obviously this means that they cannot function properly like normal.  So he wants to focus on the areas which do have some or more flow to them to help improve them.  He explained that she has two vessel areas off to the right and two to the left (each that provides the most to certain parts of her lungs).  The remaining vessels are really small and not able to be worked on.  These areas of focus have either limited flow(containing stents) or one area is very open.  The plan is to discuss with her regular cath dr., Dr. B about the next steps. Dr H is going to recommend starting another medication (Bosentan) in addition to her current one that works with each other.  He said that depending on how she reacts it could help and open up these narrowed areas or it could possibly do the opposite and push too much through causing some issues. So he is currently weighing his options. He increased her Lasix dose also to help with her heart function.  If she begins the medication, then she will start in about a month(once insurance approves) and then we should come back for another heart cath in 4-6 months to see if it is working or causing strain on her heart.  He told us that this interventions are strictly to help improve her quality of life and hopefully the longevity. He said that it is the case that her pulmonary hypertension will progressively get worse over time. He does not know how long before she would begin to decline, but she is doing well at this point. He doesn't want to do any major interventions, as she is doing so well at this point. Her heart function has not declined which is good news. He also said that since her condition is caused by her heart problem, it is not like he can give her new lungs to immediately fix things, but he said if at worst measures at this point in his area it is not something that is out of the question. She is doing well so that is a very last option.

She did well through the afternoon, except for being very fussy because she had to lay flat for 4 hours. They accessed through her neck so she has now begun to complain of some pain there. Dr H said if she was able to walk, eat, drink and pee he felt she was ok enough to leave this evening and return to the RMH for the night before returning to WV. And guess what?? Lil Miss behaved and we were discharged late this evening. Yay, so we are all 3 in the house until tomorrow and then we will head back in the am! It is so weird because we have never done this before, a little scary for mama. But she is doing well just very tired.

We were thrilled to see our old crew, as we were on CICU for a short period of time. Great to see faces that we love and feel comfortable with.  We thank everyone there for the great care and feel that Dr. H was very thorough and did well helping us understand everything.  We appreciate all the love and prayers and please continue. Justin and I are happy that she improved a little and are hopeful that we can provide this medication and help her life. We don't know how long we will have her, so we take it day by day. Some people may think that seems harsh, but in reality in our lives you have to be prepared for anything. I will try to keep everyone posted, she and I are starting school in a few weeks so things will get busy again soon. Love you all!