Tuesday, December 3, 2013

The results are in...

This is David - After a couple of weeks of waiting, the results are in....surgery is needed!  I feel like a terrible parent for somewhat feeling excited that Grace will need to undergo another open heart surgery, but Kristi and I have felt for a couple of weeks that this would be best for Grace's heart long-term.  During the echo today, the gradient across the mitral valve was between 15-19 and this was when she was completely sedated and her heart medication had been at the right dose for a few days and had been doing a good job of keeping her heart rate below 100, so even with Grace's heart being optimized, it still clearly demonstrated that her mitral valve and right ventricle pressures were too high.  We appreciate everyone's prayers and are thankful that God made it clear to both our cardiologist and surgeon, so there was no doubt as to whether or not Grace will need a valve replacement.  We do not have a surgery date, yet, but Grace's cardiologist stated that he would like for us to get in the OR soon, so that we don't have to be split up as a family any longer than we need to be.  If you wouldn't mind continuing to pray for Grace's heart, as well as for one more thing.  Grace's surgeon has only placed a couple of melody valves in the mitral position (it sounds like that is the valve that they are leaning towards at this point) because it is a relatively new and not indicated procedure (meaning, it hasn't been studied in a large population for a lengthy period of time and approved by the FDA).  BCH is the only hospital doing it and to date they have only placed about 20 in the mitral position.  Of those 20 melody valves placed in the mitral position, the vast majority of them have been done by a different surgeon than ours, so we are requesting that this other surgeon will be involved in the surgery as well.  Our cardiologist seemed to believe that this would be very likely and he agreed that it would make sense, so please pray for our surgeon to be in agreement as well when I discuss it with him.  Stay tuned...hopefully, we will have a surgery date soon.  As always, thank you so much for your continued prayers and support.

It's me -  As David mentioned, we are excited for Grace to get a new and improved mitral valve for Christmas (although we are very aware of all of the risks associated with a valve replacement).  At the same time, I have to fight the temptation not to think too much about her poor chest being re-opened (for the 5th time!) since it is just starting to heal from her last surgery,

Check out the sleepy angel right after her echo and her pretty little zipper that is healing so nicely!

her having to go back on bypass, the nasty abrasions that she got all over her face from the bi-pap and cpap mask which was unnecessary since she is now going back to the OR anyway, etc.  However, the truth is that it is ALL (the good and the bad) part of God's perfect plan, so we will choose to rejoice that we can have confidence that His plan is perfect.  This past week of waiting for today's echo has been particularly frustrating because we have felt that we were just sitting and waiting for confirmation of the inevitable, wasting another week of our family being apart, simply because it was a holiday week and people had vacation time planned. When I'm able to put my will aside, I'm reminded that our surgeon (who God has really put on our hearts lately) had 3 days off of work in a row for Thanksgiving.  That is one of the three times all year that he gets that many days in a row off.  We have learned a little about his family in talking to one of the ICU nurses and he has a lot on his plate at home too, so we have been content in waiting because we know that he was getting some much needed family time.  Will you please lift Grace's surgeon, Dr. Pigula, and his family up in prayer?  I just know that there is so much more to him than the rough and tough exterior that we see.  Don't get me wrong, he is nice and cares deeply for Grace and our family, but he is a man of few words, making him hard to read, so I can't help but wonder what's going on in his heart and mind.  I do know that before Grace's first surgery, when we said that we were praying for him, he looked at me like I had 5 heads, but before her second surgery when I told him the same thing, he paused for a second, made eye contact, and smiled a very warm smile.  Then, before her third surgery, when we told him that we appreciated him and would be praying for him, he not only paused, made eye contact, and smiled, but he very genuinely said "thank you very much."  It's hard for me to imagine not being there for Grace's 4th surgery in Boston (5th surgery total), but there just isn't even a chance that I could leave Abigail and Andrew because they are very needy for me right now.  All that to say, David will be on his own on surgery day, so I'm trusting him to love on Dr. Pigula in my absence ;-).

I have so many things that I want to share with y'all, especially as it relates to just how AMAZING of a Village y'all are, but I know that I've probably already wore you out with my rambling, so I will save it for another day when your eyes are fresh :-).

The last super cool thing that I have to share with you is a story that some of you may have read (it's been all over Facebook and CNN just ran this story), but in case you haven't, I don't want you to miss out on this!  It is a story about a special needs child, name Maverick, that was denied a heart transplant by his local hospital, as well as a couple huge academic centers, in large part because he isn't "normal."  Boston Children's Hospital was the one and only hospital that didn't deny him a heart transplant and even more amazing, they were able to medically manage him to a point were he no longer needed a transplant!!!  I have always said that one of my many favorite things about BCH is that they will fight for EVERY child, special needs or otherwise (not that other hospitals won't, it's just evident that it is in BCH's DNA).  That is why their slogan makes my heart smile and weep ever time I see it…

Here is the link to the story that I mentioned because my summary didn't do it justice…

Such a cool story right?  Guess who Grace's roommate is tonight?  MAVERICK (from the story)!!!

I hate that Maverick is in the hospital, but the good news is that he's on the step down unit (not the ICU) and his mom said that they go back and forth to the hospital frequently, so hopefully it will be a quick fix or maybe he just wanted to meet Grace :-).  Please pray for Grace and our new friend Maverick.


1 comment:

Julie Wigle said...

Thanks for sharing Maverick's story! Wow! I also am excited about Grace's new valve for some reason…probably because then we know and hope that her heart is good to go (since I know what I'm talking about….NOT….). I've learned so much from this blog about the heart! Tell Dr. Pigula this time around that A LOT of people are praying for him! :) Love you!