The short version: I have no voice, so if I was to call you, this is what I'd say ;)
Dr. Q says that the T&A surgery will likely decrease the risk of surgery but will NOT solve the problem (we knew this) with the PH. He wants it done in St. Pete (where he works) so if anything was to happen he is there. He called our local cardiologist and they came up with this plan together (after meeting with us). He expects this will be in about 2 weeks. Then, he wants to FIX HER HEART 2 WEEKS LATER!!!!!!!! We are still waiting on a little info and an opinion from a surgeon out in WI, but unless what he says is contrary to this, then this will be the plan.
The long version:
We drove to Orlando, waited a little while, then went back into a room. The nurse practitioner that works with Dr. Q came in, introduced herself, and we talked about some things. Emma has a complete AV Canal. (yes, that's right) How long have you known about it? (we adopted her 3 mos ago from Ukraine, so about 3 months) *light goes on, Ohh... that makes more sense* (she didn't actually say that tho! LOL) When do you expect we'll do surgery? (um... awkward silence... We've been told she's likely inoperable but Dr. Q wanted to meet with us so we're here.) OH! Yes, she IS five... wow, pulmonary hypertension, wow, look at those numbers, yes, it's like the old days, isn't it? Ok, well.... um.... she's beautiful! (um... thanks? more awkward silence... ) NP quickly exits the room... somewhere in the middle there she listened to her chest. Maybe she should have looked at the back page of the chart (it's only 4 pages) before coming in? Then she wouldn't have felt like such a heel to have asked someone that's been told their kid's gonna die when it's getting fixed?? Just a thought anyway...
So... I was pretty close to tears before the doctor ever came in. Not that she did anything wrong- I wouldn't dream of suggesting that there was anything I might have done differently in her shoes. But in this case, yes, it would have been helpful to at least flip through the charts. I felt like crap.
Dr. Q comes in, says hello, we reintroduced him to Brianna and reminded him who she is. She liked him right away, said 'hi' and then got back down to play some more. Yes, I went against every rule in my book and let her play on the floor in the exam room. I figure there aren't TOO many germs and nasties in a cardiologist office. If you disagree please don't tell me about it-- it's already been done! :)
Then Dr. Q sat down and said let's discuss Emma. Explained how the PH rises when the heart is under stress, that the veins constrict as a coping mechanism and that with Brianna this likely also happened but she was so little that it immediately went back. But with Emma it might not go back so much. Or not at all, we don't know. He explained the PVOD (see previous posts for explanations) and that it could be difficult to recover from surgery with this. He said she's "still in the window" and is still considered operable right now!
We brought up the T&A, told him she's been recommended for it and we were waiting on cardiac clearance. I asked him about the correlation between the heart, PH, and enlarged tonsils/ sleep apnea. He said YES, there is a connection! He said there's especially a connection when there is no underlying defect. I agreed, but of course had one to pull out that a 'friend' had been told her son was inoperable- had a heart condition and PH. After the T&A his risk lessened and he had a successful repair. He said YES again, and agreed that he'd like to have the T&A done before surgery since we know she needs it. He just had to figure out how to get an anesthesiologist to DO it.
Next he said that of course the heart surgery will be high risk. When we had Bria's done there was about a 2-4% risk factor, 96-98% success. With Emma, it's much more drastic, more like a 20% risk, 80% success. Still... that's EIGHTY PERCENT saying she'll be ok! That's enough for me. Without it it was again confirmed to us that she will have a short and difficult life. Her heart will soon fail and she will go down hill quickly. With a repair she has an 80% chance at a longer and HEALTHY life. Yes, 20% is big, but that's in contrast to 100% if we don't do surgery. Sounds good to me.
We told Dr. Q that we've sent Emma's records to a surgeon in WI, and he knew the surgeon :) Well... knew OF him anyway. He was glad that that surgeon will be able to look over them and I am looking forward to hearing what he says about Emma. Hopefully we'll hear back in the next few weeks. Unless what he says is contrary to the current plan, we will continue on from here.
So... 2 weeks from now we can expect Emma to have her T&A and (I need to call the office and let them know that these two things need to be done too!) her ear tubes and ABR done. Then 2 weeks after that we think she'll have her HEART REPAIRED!!
One last thing. Someone asked me why we didn't ask Dr. Q about this first? Well, we tried. In April we had an appointment for Emma to have surgery, then when the cath didn't go well it was canceled by the cardiologist. Then we had the appointment that ended up being a dud on the 12th of May. So... why???? We feel like God had something else to do first. He needed us to know about the T&A (which was only on the 20th of May) and maybe to hear back from this doctor in WI. It's all in HIS timing. He doesn't disappoint or keep us needlessly waiting.
THANK YOU to everyone that has held our family up in prayer. GOD HAS ANSWERED OUR PRAYERS and provided a surgeon that is confident and willing to operate. It helps that he's only 3 hours away too :) Please continue to pray for Emma's health- that she will stay healthy, her T&A will be scheduled quickly, she will have a smooth surgery there, and that each step after will be ordained by God himself in His timing and will for her life. Please continue to pray for our family as well. We are rejoicing that it looks like Emma will be staying with us a while!!!! Micah, Brianna, and I are all still sick. Micah and I especially. It seems that although I started feeling better my throat is taking over. I've got NO voice now. Micah is still raspy. If he's not clearing up soon he may end up back in the hospital. His breathing hasn't improved much despite the breathing treatments. We're going to "step it up" and give them a little more often whether he really needs it that minute or not and see if that works.
God is good... all the time!
AND.. THANK YOU KERRY for keeping Kristopher for the day! He had a great time playing with the kids and can't wait to have them come here again soon!
