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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, November 26, 2013

Huuummmm!

While this whole experience deserves to be documented. I feel unease about writing it. Maybe I am suppressing the fear, maybe it's because things could change and I am holding onto the hope that they will change. Or maybe I don't want to send alarm out into the great internet family/friends world. Worried that I will receive comments when I haven't processed it all yet, and don't know the answers to questions that may be asked. Or maybe writing it makes it more real?  

But I can't sleep... 

Today Alex had Cardiology. Just a routine six month appointment. He had X-rays. Which when they called him, he went back "without you, okay mom" and had an echo, pulse ox, blood pressure and his heart was listened to. The kids are off track, Papa Homer is one of my biggest helpers of the other kids. He is visiting family out of town. So all four kids came.  We got some heavy news. Alex's heart isn't looking good anymore. His Fontan pressures look good, but his tricuspid is leaking severely and his function or ability to squeeze is really terrible. His liver has not gone back up and Doctor Su is very worried. He only has the one ventrical and it is just not pumping very good anymore. We could say that it is getting very tired. Alex has been in this sort of predicament before. He sort of has these highs and lows. It could be one of his lows. We are hoping it is just one of his lows. But, there is such worry that we are immediately starting him back on some medications that we hope will improve things and buy us time. We will also be taking a big step by talking with the transplant team. Transplant is not the end of worry. In fact it is an exchange of one set of worries for another. Transplant is something I had planned on, just many more years out. Back of my brain kind of deal. And, forced to the front feels overwhelming. I am sure I looked like the crazy mommy trying to digest all this information while Ry played quietly on her IPod (and listened to the doctor), Eden threw fits about lipstick she wasn't getting, and May wiggled on my lap and threw everything on the filthy floor. Sheesh! 
Clinically Gator looks amazing. That means by looking at him, you would never know how sick he is. He has 'blind heart failure'. For right now we do what we normally do. We may want to modify things some. Eliminate things that could overwhelm him. Like French immersion. What the heck would we do if he was adamant about staying? I don't know French to catch him up. He thinks he is the bomb in French... Aaah!!! Taking him out would mean starting over in another class with new friends and teachers. Is that an immediate thing so he can have a relationship with a new class/teacher? Or a cross that bridge when we get to it situation? So many things to think about. Also, getting sick is could be very bad. It could deplete his reserves. Sickies sickies stay away! 
As of right now we are in a hold tight spot. We will meet with transplant in the first part of December. Which technically is about a week-ish away. Then we will have more information, answers to the direction we are going. In the mean time I am suppresing. Jeff loves bike analogies, so here you go. 
While we have started peddling up what seems to be a very large and daunting hill. We just need to change gears in order to be more efficient.  We are not without training. We have been on many a 'push' and will surely overcome. (Even if we have to get off and walk a little) 

12 comments:

likeschocolate said...

Praying for healing, comfort, and peace! Love you guys!

Kara said...

My eyes just won't stop leaking. I'm so sorry! Please let us know if there anything we can do. By the way, he IS a super stud in French! :)

Amanda Davis said...

Love you Brynn.

Cynthia said...

I am not even sure what to say. You are one of the strongest women I know- I just wish you didn't have to be! Gator is a champ at overcoming obstacles. If he loves French, then have him stay in. It's okay if he gets a little behind, there will be many YEARS for him to catch up!

Hillary said...

Love you Brynn. Period.

Tamra Ashby said...

Oh sweet, beautiful, amazing family, we are praying fervently for you! There are 8 of us, that's a lot of prayers from under one roof, so I know God will notice.

K.J.D.L said...

It is redundant by now, but we love you.

Allison said...

Oh my Brynn! My heart is breaking for you! This news is not supposed to come at a routine check up. We will most certainly not move into panic mode until you tell us too, but we will fervently pray for sweet Gator and your whole family.

Noelle said...

Sending love and virtual heart hugs!

Kathleen Vander Linden said...

Love you all so much. Much prayers for you as you have much to yet decide and face. Sis V (Angels will be in front of you, behinnd you and at each side. i have had them myself. I know they are real especially when you don't feel strong because they hold you up.)

Jen Reeves said...

We love you guys so much, and can hardly believe our Gator bug with all his outward energy is struggling so much on the inside! We will add our prayers to everyone else! Love you! 😘

MEL said...

We'll pray for you!