Sunday, June 4, 2017

Time for Reflection

Quick update on Sierra.  She had clinic on Friday, the doctors ordered an echo, EKG and placed a halter monitor on her.  The echo looked great and the EKG looked normal, all good news.  She is still having the chest pain, but not as frequently and it radiates across her chest instead of one distinct spot.  Not sure if that is good or not, we will see what the halter monitor shows.  She seems to be asymptomatic to anything and finished her SAT and all her finals this week.  She worked her last shift at Tin Pot Creamery on Saturday night.  This morning she left with Jason, Hunter and Hunter's really good friend Jules, to head back to Oregon. Jules went to Oregon once before, but it was in February and cold.  Now there will be more for him to see and do and help Hunter ease into his transition of being home. He is a very dear friend.

Friday was our first day of summer and probably the busiest day to start vacation out with.  The morning started off with Sierra's appointment.  Both Gage and her had blood draws before the appointment, meanwhile, Jason was flying in from Oregon.  Jason had an 11:00 appointment for an echocardiogram.  I had an echocardiogram and exercise test done on Tuesday.  After Sierra's appointment and Jason's echo, we met up for lunch.  We then had an appointment to meet with the adult cardiologist, Dr. Ashley, to talk about the results of Jason and I's test results.  There was a little detail in each one that is very small and not serious.  Jason's heart size was measured 5.6-5.7.  Normal is less than 5.5.  So, it is a little bit dilated, but they don't know if it is just from a little stress, but they don't get excited until it is in the 6.0 range.  Again, NOT a major concern! My echo showed a leaky valve causing a slight murmur, but not concerning.  My exercise test results showed I was 147% of normal (that is really good I guess), the doctor kept asking if I was a competitive runner.  I guess I have no excuses now.  Final summary was, these are both really minute things, but the question being if these added together make a bigger problem with our kids.  We will re-echo in 2 years just to make sure that nothing has worsened.  That gives Jason 2 years to get ready for his exercise test to see if he can beat my score 😊.

After our appointment with the adult cardiologist, Gage had an appointment to see his old (originally born with) heart.  It was a really neat experience and interesting to see all the devices that were used to keep his heart going.  Devices like the HeartWare, pace maker wires and defibrillator.  Thank goodness for modern medicine.  Be prepared for some gruesome pictures of his heart below.   It was interesting to see his reaction to seeing it.  At first he didn't want to touch it or hold it.  After Hunter took over looking at the anatomy, Gage decided it wouldn't be so bad after all.  He held it for a minute and then was done.  Jason, Hunter and I were all very intrigued with all of it, it was so good to see it and made us appreciate Gage still being with us.

After a long day at the hospital, we returned to the RMH and received a tour of the old, newly remodeled, RMH.  On Saturday we moved back into our old room #204, but now it is #1202.  It was nice to have a lot more space and a little more privacy for everyone.  As we were packing up and moving, we loaded up the suburban with items we no longer needed and sent home with Jason.  This was in hopes that we can go home soon.

As we were packing up and moving to our new, old room,  Jason and I couldn't help but reflect on our past 2 years here.  The school experiences the kids had, the friends they made, the awesome community we became a part of through sports or interactions at school and church, Hunter's basketball and baseball, Gage's baseball, summer camps,  volleyball, band, first jobs, different places we were able to visit, family that was able to come and people we met at the hospital and RMH.  It is always interesting to me, when we are in the lull of waiting time seems to drag on, when it is over you realize what a sentimental experience you had.  It reminds me a lot of the "Footsteps in the Sand" poem, where we look back and see where God carried us through.  People he placed in our paths to help us and relationships that were made.  Experiences that helped the children and Jason and I grow.  It is a bitter-sweet to leave.  We have made so many dear friends and we hate to leave them, yet we are so excited to finally be able to go to our home.

We will have another adjusting period when we get home.  Adjusting to actually ALL being together, rekindling friendships and figuring out where the kids fit in with their old friends, and juggling now 3 transplanted kids instead of 2. But, we will savor every moment of it and enjoy it for as long or as short as it lasts, because who knows what our future holds.

Lindsey and her really good friends Keira and Kirtana.  She will miss them! 


Above is a picture of Gage's old heart on Friday.  Pathology has sliced it and removed parts of it for testing.  The wires on the green cloth are Gage's pacer wires and his defibrillator.  Below, is a screen shot of Gage's old heart coming out during transplant. 





Had a fabulous evening with Mr. and Mrs. Blazinsky.  Gage helped mash the potatoes.  Such wonderful friends.



 Gage and his adorable monkey face.

7 comments:

Tara and Josh said...

Stacy - your comments remind me of my time on a mission....Questions like "will this ever end?" to "where has the time went?" to "oh, how I am going to miss these people!" The emotional roller coaster your family has been on is something I can only imagine and I am amazed at your steadiness!
So, that looked like one fancy potato mashing machine Gage was running. I think we may need to look into one of those as sometimes the consistency of the potatoes I make are not up to expectations.
Good luck with the new old RMH room. I find it quite ironic that you are back in that room now that it is time to leave (hopefully!!)

The Reading Nook said...

I hope the holter monitor gets to the bottom of Sierra's chest pain! Glad you have more room in the new RMH room!

Unknown said...

Thanks for the post! The last 2 1/2 years have held a lot of your guys and will impact the rest of your life.I am so hopeful for you all to be together again.

Anonymous said...

Could it be her gallbladder? My son had similar pain a few years after transplant and it ended up being referred pain from his gallbladder.

Anonymous said...

Gulp...sniff.....thinking of you all from High Valley!

Bina said...

Guessing you may be raising some future cardiologists with all this rich experience.💟Thank you for sharing the details of your journey, love seeing trials resolved to inspire me that things can and do change for the better. 😇

Karen W said...

Glad things are going well and hopefully heading towards Oregon. Glad Sierra's initial tests look good...gall bladder does sound like a good possibility...my friend gets chest pain with hers. The heart pics were so interesting...you kinda forget that without the blood flow it will not be red in color. But definitely glad Gage had technology on his side, it didn't look very healthy. Glad the man of steel has taken down that Kryptonite!!