Friday, January 18, 2013

Boston said...

So, the way that I last left you, Grace was in the process of having her heart catheter procedure...  The procedure lasted just over 4 hours and the Dr said that she did great and even gave us some of the pictures of Grace's heart.  She said that they did not see anything new of which they were not already aware, except that her pulmonary pressures looked good (which is certainly praiseworthy)!

Since the heart catheter, the things that have transpired have been like one hug after another from our Lord and Savior...

After Grace was taken to recovery her oxygen levels remained low (her normal is 82%, but they remained around 71%-75%), so they decided to keep her overnight just to keep an eye on her.  She just didn't look like herself that night so I was a little concerned, but I had to leave the hospital around 6:00 p.m. to get home in time to put Abigail and Andrew down (they do so much better when momma is there when they go to sleep and wake up).  When Grace woke up the next day, David sent me a picture of the monitor which showed that Grace's oxygen levels were at 90%; her oxygen levels have not been that high since before her first surgery!

By God's grace, while we were at the hospital we were able to get DVD's made of Grace's heart catheter results, from that day, and of an echo they did last month, which I didn't think I would be able to get that fast, to send to Boston.  I found out that there was a Fed Ex office not too far away from the hospital that had a 7:30 p.m. pick up time.  The hugs from God just kept coming...  David and I agreed that paying the small fortune (about $80+ dollars) to overnight the DVD's to Boston was worth it because Monday, being a holiday, might slow down the process of finding out the options for Grace's heart.   I remembered one of my sweet counterparts telling me about a Fed Ex discount card that she got when she first started with Pfizer, so I texted her to see if she was anywhere nearby so that I could borrow her card.  She offered to turn around and come to meet me, but when I told her that I didn't want to inconvenience her like that, she said to just give them her 9 digit number and that should work.  I honestly didn't think there was a chance it would work because I didn't have the card in hand, it was in her name, and attached to her credit card.  To my astonishment, when I asked the lady who worked at Fed Ex if I could use the Fed Ex account number to get the corporate discount, she entered it and her eyes got really big.  She said "Wow! You get a really good discount!" The cost went from $80 + dollars to..... $14!!!!!  That is shipping it from Houston (at 7:30 p.m.) to Boston (arriving at 9:00 a.m.)!  Can you believe it??????

As I was sitting in bumper to bumper traffic in the Medical Center, trying to get to the Fed Ex office, I was praying and begging God for His peace and reassurance that this was all worth it and just then I noticed that the bright yellow car I was sitting behind (for what seemed like an eternity) had a license plate frame that said Boston Red Sox.  Now, don't get me wrong, I'm not saying that God always gives us signs nor should we require that of Him, but it was one thing along with many others that just blessed my socks off as I felt and so appreciated His personal and generous hugs!

I went home and loved on Abigail and Andrew some before putting them to bed and then as I went to bed alone missing David and Gracie, I received an encouraging series of texts from a sweet friend and amazing decorator who ended her texts with a few simple words that are so true and so what I needed to be reminded of at that moment... she said that I can get some rest and have peace because "God's got this."  I know that truth and believe it, but those words are what I held on to that night, all day yesterday, and this morning, as I waited with peace and patience (well, my form of earthly patience :-) that can ONLY come from God (I believe your prayers unleashed His power to provide me with that type of peace and patience).

Then, this morning I got an e-mail from the Surgeon in Boston that literally made me hyperventilate as I read it.  He said "we see nothing prohibitive with regards to a biventricular repair."  He said that he would like two additional studies done (an MRI and 3D echo) to confirm their opinion and he recommended not moving forward with the Glenn procedure (which is what TCH was planning to do in late February early March).  There really aren't words to express the level of joy and gratitude that I felt when reading his e-mail, so I forwarded it to David to make sure I wasn't hallucinating and then I cried and praised the Lord.  Before I allowed myself to move on to what our next steps were, David and I agreed to just soak in the blessing we had just received and spend time thanking the Lord for His sovereignty and goodness!  We are well aware that we have a long and bumpy road ahead of us, but we trust that God has got it!  

It sounds like our next steps will include going to Boston to have the two studies done and they will tentatively schedule a surgery date to coincide with that trip.  If the Dr's feel, based on the studies, that it is a good time for surgery they will do it then or if they want to hold off on doing the surgery at that time, then we will come home and return at a later date(s).  We don't know how many surgeries are in Grace's future, but we will certainly keep you posted.  Will you please pray for all of the logistics that go into traveling to Boston, being apart as a family, how it will affect Abigail and Andrew, that the two additional studies are just further confirmation that Grace is a great candidate for a biventricular repair, and, of course, that there are no complications to surgery, etc?



kimk said...

Thanking God and trusting that Grace will soon be apart of our bivent club! Regardless of God's plan, you are now apart of our heart family.
I really am amazed how quick you heard from Boston!! Wowie!!! I think that is a record! How wonderful, because the waiting to hear is not fun!
You are truly a momma and daddy bear, out to fight for your baby cub!! God knew what he was doing when he placed her in your arms.
Xoxo to that sweet precious girl. Will sends high fives!
Kim, mom to Will pagename HeWill
In case any family or friends want to read his story : )

Darla3150 said...

Hey Y'all! This is Luke's mom, Darla. I think you may have seen Luke in Gabe's Story...the guy with the cowboy hat! Way to fight for your baby! Kim told me about Grace so we just wanted to say hello and be here to offer you encouragement or to answer any ?s you may have.. for someone that has been down the road and back...we were in CHoB for 6.5 months. Luke is 11 now. If you want to read about him
or email at or you can call 954-972-1898
We will add Grace to our prayers! Big hugs!