Monday, March 4, 2013

Boston adventure...

David and I are treating our trip to Boston as an adventure because there have been so many unknowns that we have already had to work through and yet one thing remains...  God is good!  

We arrived in Boston yesterday evening and Grace was a little angel on the airplane.  

"Check me out, just snoozing away with Daddy!"

We stayed at a Ronald McDonald like house last night, which used to be an old dorm room for nursing students, where you walk into a room that barely has enough room for a queen bed in it and you share a single bathroom and shower with everyone else on the floor.  We are so grateful for the amazing service that this house provides, but it didn't take us long to realize that walking 4 blocks to the hospital with Grace in 30 degree weather (the shuttle that we thought we could take wasn't available); needing to give her a pre-surgery bath (bath with surgical scrub, etc) in this tiny community bathroom wouldn't be ideal; having to walk back and forth to the room by myself would be super scary (especially because they weren't kidding when they say that only one person can stay in the ICU with Grace because there is hardly room for one person there); and lastly, being 4 blocks away when your baby is in critical condition doesn't seem far, but it is.  With all of that being said, thanks to the generosity of so many, we were able to get a hotel room right next to the hospital, so we just checked into our new room and couldn't be more grateful!  I was praying about whether we should switch rooms/hotels or not because I didn't want to have to spend more money, but also knew that it would make so much more sense to be closer to the hospital...  and just then, my toothbrush fell into the toilet.  For some reason, from that moment on I was sure that moving rooms made sense :-).  

"I love our new room and how my Daddy can always make me laugh, even after a long day at the hospital!"

God's sweet hug yesterday came as we were boarding our airplane.  We had the window and center seat and the gentleman that we would be sitting next too was already in his seat as we were boarding, so inside I was bummed that we would for sure have a neighbor and not an open seat.  The second he got up to let us in and offered to put our GIANT diaper bag in the overhead for us and commented on how cute Grace was, I knew that if we had to have a seat buddy he would be a good one, but never did I know that he would be God's hug for me that day.  I can't remember how we began talking about Grace and why we were going to Boston, but I quickly realized that he must be in the medical field because of the questions that he was asking.  As I told him about Grace's diagnosis and why we were traveling to Boston, he said that Grace looked so good for a "heart baby" and he had full confidence that she would do great!  Besides just being a really nice guy, what would qualify him to say that.... well, he just so happens to be a Cardiologist at Mass General!  He must have made the comment about what a good baby Grace is, how great she looks, and how confident he was that she would do great in her surgery about 5+ times and he was so generous as to talk me through some of the concerns that had been weighing on me (risk of flying, fear of germs, potential complications of the surgery, why some Dr's respond the way they do about second opinions, etc).  Long story short (well not that short because I don't know how to tell a short story- sorry!), God gave me a big hug by forcing us to have a flying buddy that knew just what this Momma needed to hear as we begin this journey!

We were at the hospital for our pre-op appointment at 7:30 this morning and didn't finish until about 1:00 pm, but there was hardly a minute of down time.  They run that operation like a well oiled machine.  We did X-ray, EKG, vitals, blood draw, hospital tour, meeting with our Cardiologist, Cardiology PA, Surgeon, surgery fellow, and Anesthesiologist with out a whole lot of wait time in between.  We loved everyone that we met with today and couldn't be more grateful for the heart and gifting that God has given them (not only in Medicine, but in interacting with patients and their families :-).  As much as we enjoyed meeting everyone today, one thing that that was hard is being reminded of the reality that lies before us and that is the critical condition that Gracie will be in shortly and the seriousness of her surgery. It's not like we didn't know that (especially because we have already been through one open heart surgery), but it's amazing how quickly you forget how traumatic it was; also, the reality that we are not guaranteed a bi-ventricular repair until they see the additional images tomorrow.  This is where you come in sweet friends and family, will you please pray that the MRI and echo tomorrow only confirm that Grace is the perfect candidate for a bi-ventricular repair and that they don't find anything that would make them question that?  We also learned that in addition to an MRI and echo, there is a high likelihood that Grace will need another heart catheter tomorrow to potentially do a balloon procedure on her aorta (which was corrected during her first surgery).  If she does need the heart catheter tomorrow, surgery will be moved back to Thursday or Friday (that makes me sad because I'm going home to be with A and A on Saturday, so I'll have to leave while Grace is still very critical) in an effort to give her body time to rest after the catheter and before surgery.  Also, if she has the catheter tomorrow, she will stay in the hospital tomorrow night, instead of in the hotel room with us, so it's one less night with her before surgery.  Lastly, this morning Grace woke up and had a small red spot on her surgical site (where they cut her open the first time) which she has never had before, so I was worried that it may be an infection which would only delay surgery, etc, so I showed everyone that we met with today and they all felt like it was more of just an irritation not an infection.  Will you please pray that it's not an infection and that she does't get any other illness before or after surgery?  By the way, we made a CVS run yesterday where I bought a new can of Lysol for our room and I can not tell you the joy that it brought me!!!  

"Hope this picture makes you smile because for some reason it makes Mommy and Daddy laugh.  This was me doing tummy time as I waited to see one of the many Dr's today!"


Well, I guess that's it for now...  Tomorrow is another big day, so please keep the prayers coming!  THANK YOU!!!  We love and appreciate you more than you know!

5 comments:

The Keierleber Family said...

Praying away! So glad y'all changed rooms! Totally worth it!

Kathy A. said...

I have the prayer warriors mobilized!

Loved the pics,
Aunt Kathy

Joyce said...

I just sent you a very long winded comment, but it is not showing. :( I hope you guys got it. I have never blogged before so after I put in the two words I had to set myself up for blogging, but now I can't find what I wrote. If it does not show up, I will try to remember and re-type my comment.
You guys are in my prayers throughout the days :)

Elise said...

Praying my sweet friends! A hotel room is just another example of how God knows what you need and will provide. Praying for today!!

Suburban Stitcher said...

hugs and prayers headed your way!