Weighing our options

The frustration is real, you could almost cut it with a knife right now in our household. I have spent a lot of time sending emails, on the phone with my ex husband, sounding off with friends, and asking advice from other heart moms. So let me start at the beginning so you can understand why I am feeling this way, why those closest to Lily are feeling this way. 

Yesterday was pre-op testing. We get there and not even 15 minutes into waiting does the surgeons PA come in and say, "OK, try not to be mad." First off, don't start off with that statement, if you don't want a person to be upset. She continues with, "We have been discussing Lily all morning, and I am pretty sure that Dr.V wants to do another cath before doing a OHS." I am pretty sure my nostrils  flared at that statement because she put her hands up and said, I am not positive, and we'll wait to hear for his final decision, but he is in surgery right now. "

So we waited, several hours mind you, no pre-op testing being done, because since they were not sure Lily was going to surgery, they were not going to put her through blood draws and such, when they can just get such things in cath lab, once they put her under. 

Dr. V finally came in, with his PA, while we were getting an echo, because they wanted a new one, so they had that for her cath tomorrow. Every time I say the word cath, it leaves a bitter taste in my mouth. He was very short, because he had another surgery to get to. He told us he wanted to get a better understand of her heart, because it is very "complex". This is a word I hear them use every time we talk. He said that they need to look at the fistula, the arch, and her hole. To find the best approach in "fixing" them. 

Hold just a second. I know we went in and tried to fix issues in her last cath, but we decided from that last one that she did indeed need surgery to fix these issues. Now, months later, you are unsure all over, and need another cath to look at things again. To put a child under repeated anesthesia is a risk, but a child who has sleepy heart rate also known as Bradycardia, is another risk. Last cath, Lily had a lung collapse too, she is battling with lung pressures. I am slowly losing confidence in the cardiac team, and this is something I have discussed with Lily's father, and now with Lily's cardiologist Dr.R. 

We love Dr.R, he has been her doctor since she was born, I trust his judgement, and he has been the one advocating that she needs this surgery. The surgeons PA even said to Chris and I that they didn't want to call him to tell him that they decided to do the cath vs surgery, because they knew it was going to be a fight. I understand the need to obtain as much information as you can, but her cardiologist even said it was not critical for them to do so, but he is just her cardiologist, not a surgeon. He did say, if the information we gained from this was not in at all helpful, he would help us find other doctors and surgeons for second opinions.    

We have never once had to think of going that route, it truly saddens both Chris and I that we have come to this point, but when you have lost confidence and trust in the team that is in charge of your child's health and wellbeing, and on such a huge magnitude, you do what you have to do. I would move heaven and earth to protect my daughter. I have said it before, I would gladly trade my life for Lily's, if it meant for her to live happy and healthy, as I know any mother would. I started doing research, her original surgeon retired but came out of retirement and is a professor at the University of Alabama, oversees cases at the Children's Hospital of Alabama, granted he may not be her surgeon, but he would have his hands on her case, and to us that would be all that matters. Other wise, we are looking at Stanford, CHLA, CHOP, or Texas Children's Hospital. We will have fresh cath results, echo, but a surgery done 7 years ago. I am listening to my mothers intuition on this, it has never failed me before, I pray it won't fail me now. 

So, Wednesday we have cath, we will be in the hospital 1-2 days, Lily doesn't respond well to them at all.I will update that day and let everyone know what is going on then. 

To everyone who donated on Go Fund me. All that money is going into a savings account, so when we do have surgery it is there. Heaven forbid we do have to travel, it will be needed for that.