Where are we now?
I am sorry it has taken so long to update. I know everyone is waiting to hear the details, and honestly last night was the first chance I got to just sit down once the house was quiet, and think. We did make it home on Friday afternoon after a long couple of days and lots of new information. To be honest, I wasn't ready to type out more details much earlier than this, because I needed more time to process, and piece together the bits and pieces of information we got, including the things I may have blocked out because, let's face it... I didn't want to hear it.
I am going to start with the good news (the part I choose to focus on). Obviously, the main thing was that Andrew got through the procedure like a champ, just like he always does. Dr. Divekar was able to place a stent (even though that wasn't what we wanted, at least he was able to do it, and placed it right where it should be.) Andrew's pressures started out about 60 when we came in, and came down to 40 when we left (and don't ask me what those numbers mean, because I honestly have no idea). All I know is that lower is the goal, so there has been some improvement already.
He showed us the right side first- the PA's, lungs, etc. From what I understand, he is happy with the way things look and saw no need to do any interventions on this side (another positive). However, the left side was significantly different. Shocking to say the least. The branch pulmonary arteries (coming off the left PA) were as thin as a strand of hair at the base, then they got larger (but not big by any means) the further they went out to the lungs. This was the first surprising thing that we saw, because we always thought it started out bigger, and got more narrow towards the lungs. Not the case.
Apparently, Andrew's body doesn't compensate the way a "normal" one should. Since his PA's are choosing not to grow, even after his surgeries and interventions that have been done thus far, doctors are thinking there is some underlying genetic reason for all of this. Here's the part where he also brings up the hearing loss, coupled with his complex heart defect. Evidently, this is a sign that points to a genetic issue that they all of a sudden want to try to get to the bottom of. At this point I become annoyed because I am not sure why this hasn't been brought up before. We saw genetics when Andrew was a baby coming out of the NICU, but it was always chalked up to an isolated heart defect, an isolated hearing loss, and just an all around "fluke." (We like to think that my dad is leaving marks on my children to remind us that he is with us... as he died of heart problems, and he also had a hearing loss...and Kerigan's heart shaped birth mark is no coincedence either. Come on, dad!) So I ask what difference it makes if there is a genetic issue... at this point I'm thinking, who cares? What is it going to change? What's done is done. Apparently, they get concerned because if there is something they are missing, there could be more problems in the future and they need to know how to treat him. For example, many kids with hearing loss also have kidney issues, so they wanted to do a kidney ultrasound and multiple spinal x-rays (again, why this was not done a long time ago... I am still unclear.)
Quite frankly, I do not think this is something genetic. And if it is, I just don't believe there are going to be more problems in other areas for Andrew. I truly believe that God and my dad worked together to send this special little boy to us. Heart defect and hearing loss included in the package deal. And it's as simple as that.
I don't want to go there.
(But I'll tell you briefly because people ask and want to know... long term, his heart can't go on like this with the pressure this high. Sure, he's fine right now. He can live like this right now. But I like to think that my son will outlive me... and that's why his PA's need to grow.)
And it looks like that's not going to change anytime soon.
Please don't think that I am complaining. Because I know it could always be worse. I have seen worse. I am not oblivious to the world around me. We have been very blessed to have Andrew be as healthy as he has been for so long. Dr. Divekar wasn't pessimistic about this (well, the first day I thought he was, but after talking to him again, I was more reassured). He said if Andrew was a lot older he would not have much hope, but since he is still so young, he believes there is a chance things can still improve for him. I just think that I am allowed to have moments where I can still think that this sucks. Everyone is always telling me that I am so strong. Well, here's my moment. That isn't always the case.
Whew. I think I got through mostly everything. And if not, I'm too emotionally exhausted to write anything else. Thank you to those of you who actually read the whole story, so I don't have to explain it a billion times. It is so much easier to write it down and have our family and friends just read it so they know what is going on. They know our hearts. Then when we talk, we can actually go beyond the basics. I love that. So thank you for sticking with me. In my next update I'll write about the rest of our trip and the good times we had, because we did have some fun. And to make up for everything else, we like to show our Andrew a good time! And despite everything he's been through and has yet to go through, this kid knows how to party!
Thank you for covering us in prayer. Please continue to keep Andrew in your prayers every single day. He needs a miracle. And we know it's possible.
Jesus looked at them and said, "With man this is impossible, but with God all things are possible."
Click here to read about our heart story from the beginning.