Sorry it has been so long between posts, life is a little busy with a three-year old. :-) Plus I decided to return to work part-time for a little extra money and to get out of the house, so that takes up some of my time also. After her last heart cath in August, her cardiac team decided to conference on her to see what her options were regarding surgery. After a long discussion, they decided it would be best to attempt a surgery on her left pulmonary artery. They felt that this was her best option in her plan of care. Of course the decision of any procedure on her is ultimately ours as parents; however, we always said that if the opportunity presented itself, that we would always try to improve her life. So, that is what we did.
So-in September we trecked up to Cincy for a visit with her cardiac surgeon Dr. Eghtesady. The surgery which he will be performing involves a left pulmonary artery which is coming off of her aorta. The artery is a good size and would provide a very good amount of blood flow to her left lung, which is the sole purpose of surgery. He wants to help improve this, so that her pressures will attempt to go down in her heart. He will take the artery and attach to a collateral artery that is coming off the top of her heart. It will be performed via thoracotomy(through her side) instead of a full open heart, not requiring the bypass machine. However, they state that this surgery is actually more painful than through the chest. She had this type last year and she had quite a bit of pain from it. If this works, then there is potential (remember-potential) for an additional surgery in the future to fix the artery that is on her right side which became blocked off previously. That surgery is even more complicated, so it is not even being discussed right now, because he wants to see if she will tolerate this one first. It also requires being on the bypass machine and as the surgeon states-obviously Jenna does not like that machine, so we will wait til she is stronger. We spoke for about an hour with him, discussing all the details of surgery and he was kind enough to answer our questions. He said that he is concerned about Jenna and her situation (hence all that has occured in the last year to her); however, he feels that doing the surgery and helping her, giving her the opportunity, outweighs that concern. He wants to help her as much as possible and if this surgery is successful, then he is certain it will help improve her quantity and quality of life. He did say during the discussion that it is going to be a very difficult surgery, lasting 5-6 hours. Of course, there are always risks involved-bleeding, diaphragm damage, anesthesia issues. All in which we are prepared for. He is also concerned about her pain control-babygirl likes the drugs! Dr. Manning, another heart surgeon will also be in on the case to assist Dr. E. He said that we should know within a few days after surgery if this will help her. We are hoping for the best, but if the only complication post surgery is that it does not work, I can live with that. I just do not want her to go through all the pain and heartache she went through last year again. We feel with having a trach and a g-tube, this will be to her advantage with this surgery and will help her go through more smoothly. He did say that regardless if it does not work or does, eventually she will have to have a heart-lung transplant because he can help her maintain her life at this point, but it is not possible to lower her pressures significantly enough to keep from causing damage down the road. But we will discuss that when we get there. No reason to borrow trouble from tomorrow at this point. At the end of our conversation, he did say that he wanted us to know that Jenna has a "fan club" and he was her #1 fan. He said, and I quote-"I will go to hell and back for that little girl, and your husband and you also" This meant a lot to Justin and I, no offense to doctors, but that being told to you by your surgeon is not something that you typically hear. We feel so blessed to have him as our doctor.
So, we are scheduled for her surgery in the morning, Nov. 9 at 7:30am. Today we went to the hospital and did pre-testing(bloodwork, chest xray, ekg, nurse pracitioner visit). She came through all just fine, no issues other than she wanted out of there and was very hungry! We had the chance to be able to see a few staff from CICU(our second family), which was really nice. We hate that the only way we see them is on these circumstances, but we know that they will take care of her very well. This evening we have tried to relax and spend time with family, attempting to keep our mind off of things. However, that is a little difficult, but we hope for the best. We know that we have quite the support team behind us, which we cannot thank everyone enough for. It is amazing the love and generosity which people show you in your time of need. We also did get a call this evening from the Ronald McDonald house, they have a room for us. Yay! This way we are much closer to her if needed(they are right next door).
So, here we are again. Of course Justin and I are very nervous, scared, anxious, all of the above. We know that the team which will be taking care of her is one of the best, so we feel confident in placing her in their hands. Jenna has been doing so well recently, her speech has blossomed over the past few months. She is so happy(for the most part-haha) and smiles all the time. She has brought so much joy and happiness into our lives and we feel so blessed to have her as our daughter. She has taught Justin and I so much in the 3 1/2 years which she has been on this earth. She is so quick and smart, it is amazing. Also, she is able to master electronics-crazy I know, but my little lady can operate an I-phone. Very scary. :-)
So, at this time, we ask that everyone start those prayers. Babygirl is tough and quite the fighter, but we feel that her determination and the power of prayer has gotten her this far. We want to thank everyone in advance for the love, support, thoughts and prayers. We love you all!! Better run....4:30 comes mighty early. We will keep everyone posted as often as possible tomorrow!
Love, Jenny, Justin and Jenna