On September 18th, 2 weeks after the heart-breaking news of Mason's 'pre-transplant' heart cath, we went to Primary's and met Dr. Kouretas (Mason's Heart Surgeon) and Dr. Everett (Mason's Heart Failure Cardiologist). Mark and I felt like it was important to ask for this meeting to hear Dr. K's thoughts on Mason's cath lab results, as well as his opinion on Mason's prognosis. Dr. E had also pulled up all Mason's past Operating Room reports, sedated echos, cath lab report before the Glenn.......basically anything that would give her and Dr. K a look at his pulmonary veins that have caused us this huge obstacle.
I thought that waiting 2 weeks was long enough for me to get through this meeting without crying, but I didn't get 3 words out without crying. Good thing there was a few boxes of kleenex in the room to get me through the meeting. Mark ended up getting called out of town on business so I was the only one there asking the docs all our questions.
Dr. K expressed his sadness for us. He also expressed how difficult it is for him and his team when they have a case like Mason's when they can no longer palliate or correct his heart disease surgically. He did agree with us on seeking more information and opinions on a heart-lung transplant for Mason. He was not very optimistic about it, because he said they are very high risk, but said seeking these opinions will help guide us in a decision. I even asked him what he would do if this was his child (Dr. E had already told me the day of the Cath she would never put her child through this type of transplant). He said he'd like to say he wouldn't because of the statistics, but said he truthfully couldn't answer that because he's not in our shoes. This made me feel better, knowing he understands when your own loved one is involved it would be very difficult not to keep fighting.
I asked if his PVS (pulmonary vein stenosis) was something we could have seen sooner , in time to have corrected it or listed for a heart sooner before his 2 veins were completely obstructed. As they both reviewed all the above mentioned reports, they noticed that his lower left P vein had probably been diseased and narrowed since birth. During his first open heart surgery at 10 days old, the OR reports show turbulent blood flow in that vein. So that one has probably continued to narrow over time, just part of his heart disease. They wouldn't have done anything to correct it or list for a heart because it is ok to have 1 of your 4 PV's not working. ( There are 2 on each side of the heart going to each lung).
As for the other left PV that closed off, it had been fine even in his heart cath before the Glenn (his 2nd open heart surgery at 6 months old).....but speculation is that a blood clot may have narrowed it and eventually closed it off. This is very possible because Mason had a blood clot in his SVC (superior vena cava) since 1 month old that we treated with shots everyday. It was there still at his pre-Glenn cath. but 2 weeks later when his Glenn was performed it was not there anymore. Dr. K had planned on removing the clot during the surgery, but had reported to us it was not there! I'm not clear on why the OR report at that time would not have shown an obstruction or narrowing in that upper left P vein if this is the case.?? They believe that the upper vein may be diseased just like the lower one, so if a clot did get caught in there and began to narrow it....it just was not strong enough to stay open. The questions I asked that day seemed to create more questions in my mind!
Although you can always continue to say "what if?"......and "how come"....... I'd rather just take what the situation is now and GO FORWARD WITH FAITH.
We did have Mason's info sent out to 7 different Children's Hospitals so we should start hearing back next week! Oh how I'm praying for optimistic opinions! Dr. K did also offer to sit down with us when we get all the opinions back and go over them with us. He wants to help us understand the other hospitals' answers and help guide our decision if we we would like. As for Mason's prognosis, something I try very hard each day not to think about, both Dr. E and Dr. K say its hard to know..... but that his months with us are probably numbered. Unless of course there are still more Miracles in store for our Miracle Mason!!!!
A big thank you from our family goes out to all of you for your concern, kind messages, amazing acts of service (meals, house cleaning, help with laundry, help with homework, yard work, planning of fundraiser, donations....and much much more) and most importantly your prayers on our behalf. This has been a very hard month emotionally for me. I couldn't do it with out all of your support! Thank you, thank you!!
For now, I will continue to enjoy every minute I have with my precious little boy! I will never complain again about sleepless nights, for now it just means more time with my Miracle Mason!