September 18, 2013

Post cath conference.....

I will start this post by saying, that in no way do I or Justin not appreciate every ounce of support, love and prayers given to us and our sweet babygirl. We really and truly cannot thank everyone enough for everything, we would not have pulled through all her moments of procedures, surgeries, heartbreaking news and just her life in general without each and every one of you. At this point, given news we received from her conference, we are just at a loss. Not exactly the way life is supposed to pan out........

As you all know, Jenna had her 12th heart cath a few weeks ago. They decided that at that time in the cath lab all intervention had been exhausted and at this point we would need to have a team conference on her to decide what, if any other options could be done in helping her condition.  Yesterday, they finally met. According to her cath doctor when we spoke, he said that about 100 people were in the room to discuss her case and they talked about her for quite some time. He said they discussed all angles of her care and the deciding answer was just to attempt medication which may help with her pressures. He said that they would not "fix" the issue, but may give some relief since her numbers are so high. He is arranging for another doctor who is in charge of the Pulmonary Hypertension group to take on Jenna's case for this portion of her care and they will be contacting us soon to discuss what they will be starting on her. He said that they are not certain the medication will help at all, but it is worth a try. He said he personally spoke with this doctor and another who has recently joined the team(who came from England) who stated that a few trials have been done on children like her and they have responded somewhat to medication. I will let you know that the reason they cannot be sure it will work is because typically these medications are used on people who develop pulmonary hypertension for no reason, were healthy before and suddenly have issues, typically they are in teens or adults. In Jenna's case she developed because of her heart condition, which could not be repaired and eventually caused damage worse to her arteries and high pressure. So this is why they are unsure. But we will give it a shot.

We further discussed the options previously discussed in regards to her conduit and possible transplant. He said that the new heart surgeon is very aggressive and willing to try everything on most children, but given Jenna's history and her anatomy he is not comfortable with recommending surgery at all. He said that changing her conduit(connection to her lungs from heart) would not be beneficial enough to her and feels putting her through that surgery now would not be the best for her. He said that the only reason they would discuss a conduit change would be if it would obstruct(close off). Right now it is wide open, but with that it is causing more strain on her right heart, but there is nothing you can do to help it. He said that if it would close, they have the option of going into the cath lab and placing a stent in it if needed. She is not a candidate for the melody valve either due to her anatomy. This is a valve which can be placed in the conduit via the cath lab to help with prolonging the need for open heart.

 In regards to transplant he feels that again her history, anatomy and also the outcomes of heart-lung and lung transplant are not a good idea. She is way too high risk they feel. As you all remember Jenna bled for 2 hours after her last open heart before they could close her up. She has since had 2 thoracotomy surgeries(on each side of her chest through the ribs). So that, along with the risk of bleeding together they feel that it is very unsafe for her to proceed. He basically said that we are not confident enough in saying that if we did the surgery on her tomorrow, we cannot be sure she would be with us the next day. It is just not safe. Those types of surgeries also do not have a good life expectancy post operative, at 5 years less than 50% are still alive. In the medical world, that is not a good number. Plus, they are done(not thousands but some), but at only a few hospitals in the country. I mentioned possibly sending her information to her former surgeon, who is now at St. Louis Children's. He is part of the lung/heart-lung transplant team there. We just want his opinion possibly for the reason that other than her cath doctor, he knows her the best "on the inside." So, he said this would be an option just to get his thoughts. The team thinks that this would most likely be the best hospital because they have done so many transplants and are experienced, if her options would ever change.  He is not sure any hospital would take Jenna's case just because she is so high risk, but if we want we can look into it we can.  He feels that since she is doing so well right now they would hate to put her through any difficult surgery. At this point, he just wants to monitor her, try these medicines and determine when to re-cath her again. He feels that it will probably be in a year, because there is not reason to just "bring her in." He wants her to enjoy life, do fun things, be a kid. He wants her to just live. Her life has been so consumed in the hospital, he feels that it is best to give her a break and just enjoy the moment. He was sorry to give us this news, but he said we can be hopeful that the medicine may help a little and Jenna will be ok for a while. He obviously cannot give me a number of how long her heart can withstand this pressure, but he does know that at this time she is very happy and full of life. Even though her heart function is moderate-severe on her right side she still manages. She has maintained this level for a couple years now and been ok. Other than her usual tired and leg cramping which we are used too, no major symptoms. He said her decline of life activity will be slow and could last for quite a few years, but it could also change tomorrow on a dime. We don't know how long, 1 year 5 years or 20. Who knows.

So, at this point Justin and I are just trying to take this point of her medical treatment in. Did we know that this day of telling us intervention is done would come at some point? Yes. Did we want it to happen or expect it so soon? absolutely not. Can we change this plan in her life? No, it is her path given by God. Do we want to? Yes but know we can't and should not try. Do we pray things change for her? Absolutely. Do we live in the reality of this life that one day(sooner than we want or expect) we will have to say goodbye to our sweet little girl? Unfortunately, yes. My point is, we as well as everyone else always and will hope for change in medicine and a miracle for her. He has done it before, we have witnessed her being taken from us and brought back, right in front of us. Not something any parent should endure or have to deal with but did. I know that Justin and I do not attend church as we should, but with a child who gets sick as often as her we have always been worried of large crowds and germs. We have to be careful with her. We have "our relationship" with God and know he is there for us. Are we angry with how things have turned out for her and us? Yes, we are human. We can't change the cards we were dealt, so we deal with this life. We handle it as best as possible because there is no changing it. God makes your path. We can try and try to change it, but it won't work. That is my opinion. We have walked in this life for some time now and still don't understand why us? But we have to remind ourselves, it is not up to us. Everyone wants to tell us, it will be ok, things will change, medicine improves, etc. Well, we can only hope, but in the same breath know that this is reality. We have to be prepared and we must live every day as if it were her last. Bottom line. I don't want to seem as if she has been handed a "death sentence" in no way, nor do I want to sound dramatic. But I don't know how else to deal with it. I have cried way too many tears, not slept, and sat and wondered about the future. I can't just say, ok, medicine will change enough in the next five years so she will be fine and can be fixed. We can't live like that, not in our situation. We just have to enjoy every day, second and minute of it as if it were the last.

So, I hope I have made sense during this post. I don't mean to ramble or seem rude or not thankful for everything from everyone. I know other parents who have been in our shoes understand, when you are given news that your child's treatment is over and she is not fixed, your heart breaks into a million pieces and you feel like your world is falling apart. This is not supposed to happen to my child, I didn't ask for this life. But God decided it was the best for us as parents and I have to accept it, which we do. We are thankful for everyone and their wonderful support, love and prayers and we ask that you continue. Again, I hope that everyone understands how we feel, one day we will not be as angry or sad or frustrated. But for now, we are. We ask that everyone just be there for us if we need you, just as you always have. We could not be more thankful for such an amazing support group for our baby girl. I will try to keep everyone posted on how her treatment with medication goes. Thank you again. We love you all.  


  1. I am loss for words. I can't begin to imagine how you are feeling and no one should have to go through what Jenna has endured in her life fo far or what you as parents have to face everyday. Jenna was put in your life because you two are amazing parents. Your family is so strong and I pray that God continues to give you strength. Jenna is full of life and such an AMAZING girl you has been through so much. We never stop praying for all of you. Please know we are here if you need anything else. Hugs and prayers.

    Lori, Justin, and Tristan

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  3. Love you guys! Will be praying as always.


  4. You don't have to explain how you feel. I couldn't imagine getting that news. We will.ALWAYS be here for all of you. We continue to pray for little Jenna and your family. We look up to all of you for how strong you have been throughout this entire journeys. May God heal Jenna's heart littleby little each day. Hugs from the Parr family!

    Lisa, Brent, slaton, and Grayson