April 6, 2012

Lil Miss always paves her own path......

Hey everyone-
Sorry I am just updating the blog...things went well for Jenna's heart cath today. I believe I stated earlier that there was an issue with her MRI and Dr. Beekman was not able to wait for the delay, so it ended up being cancelled. We have spoken with Cardiac Anesthesia and re-scheduled the test for April 18, since we will already be up here for another appointment that day. So they took her back about 8:30, which she easily went to sleep in the room. We received our first call at 9:15 stating that he had already been able to gain access, in which he was able to get through both her legs (he was unsure if he would be able to)-so that went well. Good news! So prior to the cath he had spoken to us regarding her echo and lung scan from yesterday. He states that since her last cath (may2011) both her ASD (hole between upper chambers of heart) and VSD (hole between lower chambers of heart) had closed completely. Most parents would be thrilled that this occurs, however in Jenna's case-not so great. These provided what we call a "pop off" to help when her heart pumps to fast and blood backs up causing it to have issues functioning. So he was concerned her pressures would be up too high, therefore he would have to re-create the hole if needed. Well-shortly after her first call Dr. Beekman had the practioner call us back-her pressures were much better than expected, so he did not need to make the hole for her-great!!
So, we heard from the practioner about an hour or so later, things were going well, he was able to access an artery and open it-but a stent previously placed last year in her left side had fractured, so he would need to see what options he had to fix the issue. He ended up finishing her case and she arrived back in the room around noon. We spoke with him shortly thereafter about how things went. He of course started the discussion with, well I have good news and not so good news. Always the case with Lil' Miss. He re-informed us that he did not need to place the hole in her upper chambers, which was great-he was so happy. He said that he checked her cardiac output(how much blood flow her heart pumps), which was good, as well as re checking her left ventricle dysfunction(which had stated that it had worsened since her last echo,this is a measurement of how much her heart squeezes), he measured the function and it had decreased some but not enough for him to worry to have to place the hole. Her pressures on her right side are usually close to 80, when he checked her today, she was 60. Amazing! She has never been that low! So he worked on her arteries-nothing to open on the right as usual, because the only one is occluded(closed off). He went to her left side and was able to get in to an artery he was unable to access last year and ballooned it open-it opened great and he did not need to even stent the area to keep it open. He looked at a larger artery that supplies most of the blood to her left lung, that he had previously stented. The stents in it had fractured, but the area was not occluded yet. It still had plenty of blood flow going through it so he attempted to re-stent the area but the catheter would not go through. After he reviewed from another angle, he noticed that the stents had shifted. Therefore, he would not be able to fix the issue, the only way would be through the OR :( He also mentioned that her pulmonary valve is severly leaking, so it will most likely have to be replaced. So his "thoughts" as he says are to let her a fun this summer, bring her back in six months and do another heart cath. At that time he will see how her arteries and pressures are doing and then discuss with the team about what the next step will be, most likely surgery, probably within the year. To fix her stent issue, she will have to have surgery through the front, so another open heart. But, we will see how she does this summer. He said that it would be ideal for her pressures to be in the 40s, so maybe some if she continues to grow, that this would possibly happen. We will see how things go....We asked about her heart function, which he states that this is just something we knew would begin some day. He states that it is not really bad, like her heart will fail overnight, it is a gradual process. He said that some signs we may notice of her having issues would be her decline in activity. So we will continue to monitor that. We are to see Dr. Heydarian in a few weeks and have another echo to see how things are looking. We were concerned since the stents had fractured somewhat that we may have the same scenerio as the right side, where the whole artery closed off and is not useful. He seems to not think that would occur, he feels that this artery is much larger and that would not happen likely, as the right one was very small and narrow and that is most likely why it closed off. He thinks that for now it is ok to keep her holes closed, as long as her pressures tolerate it. We will see in six months how she is, you never know with her. He seemed please with the outcome today, since there was an area to fix, but obviously we were not expecting that stent to fracture thus bringing up the possibility of surgery. He said that breaking of the stent usually happens from all the movement of the arteries, not from pressure, it is not stable so it cause them to snap easier-even though they are made out of stainless steel!!
So today she has done well, initially she had a little trouble. She vomited up blood a few times from having the tube in her throat, but they gave her some medicine and she stopped. They were able to cauterize her neck, Dr. Arjmand said it looked great and hopes that this will cause the tissue to heal together. We will see in a few weeks! She is experiencing some minor pain from it, which is to be expected. She did well laying still for 4 hours, better than I thought she would. She has played and watched tv, played the ipad. Overall she has a good recovery, just tired and worn out. So we are trying to get her to sleep now, hopefully she will be fine tonight. She stayed on the regular floor post cath for the first time since she was about a year old. So she is not as familar with faces, but they all know her of course-she is popular. :))
So we should be leaving in the morning as long as things go well tonight, hoping that she does not have any issues. Hopefully daddy and I will get some rest. Thanks to Meme and Pawpaw for bringing us dinner leftovers from PF Changs(yum yum!) since we were not able to get away-babygirl wanted daddy to not leave her side. So I will continue to keep everyone posted, thanks for the prayers and we will let you know when we are coming home! Love you all!


  1. Jenna and you guys are in my prayers always! I am so in awe of what a strong family you are.What an amazing little girl you guys have. Cant believe that lil heart can break steel <3. Love, peace and prayers :)<3 tanya

  2. Jenna is such a fighter and she and all of you are in our everyday prayers! We love you guys so much and admire your strength. Lots of hugs and kisses sent your way.

    Your friends,
    Lori, Justin, and Tristan