Monday, March 13, 2017

Day 490…. 16 months and still going strong.

Well it’s about time we update the blog….. It has been over a month now since we have update.  Unfortunately we don’t have any excitement to report.   However, as my good mother would say, ‘I need to know there is nothing to know’. So here is what we know…..

Gage’s HeartWare continues to do well.  He is in perfect health for the transplant.  His weight is slowly trending up; around 54 lbs. His blood pressure is good around 61.  (His blood pressure is totally different since he doesn’t have a pulse).  Kidneys and liver are well. Appetite still stinks but they have increased the feeds and he is tolerating it fine.   He did throw up this morning, not sure why, just sometimes he's a bit off   So tonight Stacy will have the lovely experience of shoving that thing back in where it came from. Not fun!

Gage is still pretty scared of the upcoming transplant.  After some of the tragic tough stories we have seen around the RMH and hospital, he is convinced he is not going to survive the transplant.  About a week ago he had a very vivid nightmare relating to the transplant, details I just can’t share here.  I will say it was a horrible dream for an eight year old to have. Stacy and I both agree the best thing we can do for him is keep him busy and keep his family close by.  Idleness is when the fear can set in. 
This Wednesday Gage starts coach pitch baseball.  He is super excited about that and counting down the days (2 more to be exact).  Jenna (his nurse practitioner) and the other doctors are quite excited for him to play.  Stand by for that.

Other than that it is business as usual for rest of the gang.  Sierra is preparing hard for the SAT and ACT tests.  She is taking some prep classes and working hard at her school.  Lindsey just has a ton of homework.  Frankly, she just doesn’t want to grow up. She enjoys being that little girl.  She is getting some afterschool assistance to try and keep up.  Hunter is all over the map.  He just finished basketball, starting baseball, loves his school and is doing surprisingly well at the cello, yes the cello.  He is a kid with a huge head of hair, and a lot of energy to burn.  If the energy isn’t for good then it’s targeted against his siblings and it drives us crazy!!

Speaking of crazy, we are still living in the cozy 1 room 2.5 bed RMH sharing a kitchen, utensils, appliances, fridge, and other items with 60 of our closest friends.  Over the last 16 months, we have adjusted to a new way of living, but it is something you never quite get used to.  We still miss our Oregon home. 

Speaking of Oregon, I am currently flying home for another busy week at the office and see our daughter Megan.  It was so enjoyable over the last several weeks to be home with Megan during the basketball districts and state tournaments.  They did a good job and ended up taking 6th in state.  We are looking forward to getting her back with our family, just need to figure out how to make it all work.

Now, speaking of ‘making it work’ we have spring break coming up. Oregon break is first followed by Calif break the next week.  We are flying Megan to Calif during the Oregon spring break, or the last week of March.  Stacy and I are trying to figure out how or what kids can and should go home to Oregon for Calif spring break.  Again, stand by for that.

The 5K run is still on schedule for April 1 right in between the two breaks.  This is a fund raiser for Gage’s heart fund.  The run/walk is being planned by Katie Hibbard.  She is doing a great job.  All of course are invited to participate.

Few concluding comments.  Stacy and I are doing great.  I have heard many of you say ‘Jason, I don’t know how you and Stacy do?’. The answer is, your right, you wouldn’t.  What I mean by that is that we have had to change everything about our lives.  Our home life, our school, our work, doctor appointments, our kids activities, our parenting and even our quiet time, everything is different from what it used to be.  Someday it may go back, but not all the way, it will always be different.  Really it all changed when Lindsey, our 3rd child was diagnosed with the same heart disease Sierra had, some 5 or so years ago. We thought we were through it with Sierra, but when 2 more of our children got it, we knew it would never be the same again.  Not complaining, that wouldn’t do any good, it was just some thoughts.


 Till next time, or maybe even the 'Call'   

On a more exciting note, our good buddy Owen got "the call" he goes in for his 2nd transplant at 10 pm tonight.  Keep him and his donor family in your prayers.  We are so happy for Owen!

It has been beautiful weather in California.  We have really been enjoying the sunshine.


 










7 comments:

Hannah Richins Beck said...

Hooray for a post! You do have an incredible mother and she is loved by so many. I appreciate the insight on how it feels about your experience. In some ways, none of us ever has the same experiences and, for the various reasons why, I think they are so personal on purpose. They are handcrafted as only each of us is to grow the most from them. I do think, however, the empathy felt from your dialogue blesses so many lives (even if most don't share that here). Blessings and peace, endurance and patience for you all!

Karen W said...

Have a great time playing baseball on Wednesday Gage. Always praying for your family. Hope the call comes real soon so Gage no longer has to worry. Praying also for Owen...let's hope some really good news will make Gage not worry quite as much. Amazed at how tall your kids have grown. You've all done such a wonderful job during such stressful times. Will be praying and wishing the the call comes soon and that the lord and Gage's ninja turtle strength will get him safely through the transplant. Thanks so much for the update know it's hard for you guys to find an extra minute or two...which you probably don't have to update us.

Jeanette said...

Thank you Thank you for the update! Praying "the call" will come soon.

Unknown said...

So glad to hear you guys are doing okay. I think about you and your family often. We would love to help out with the run, is there anything Donate Life Northwest can do?

Please let me know you can email me at adelmaai@ohsu.edu or feel free to share information with the organizer.

All the best to you and your family - Aimee

Unknown said...

Good morning Bingham family. I first saw your story on television and then immediately downloaded your blog on to the home screen of my phone. I've never been into things like this before ... you know reading blogs faithfully and I certainly do t write posts, but your family's story touched my heart. I want you to know that I lift you all up in prayer daily because I know one thing to be true God can do ALL things. He hears our prayers and he is faithful and just to answer them too. Know that someone all the way down in Los Angeles is praying for you and sending love and strength your way. Continue to fight the good fight of faith you will be rewarded 100 fold for all you've sacrificed and endured.
Ash

Taryn said...

Thank you so much for the update. I was so worried. I'm sorry to hear Gage is having the scary dreams and scared about the transplant, but he is too tough. O, gotta ask, who cut their hair? BUSTED! All my love always

Amy Kapuanani said...

Great post, if only to know there is nothing to know. I was checking every week, just in case. We have a fellow Oregonian liver transplant family down: Baby Maddie and her mom Kallie Caito. I think they will be there for at least another two months. By the way, Oregon weather has not been very sunny or warm or enjoyable, but I'm sure having your own fridge and spatula would be a dream. Many prayers to you all. Oh, I see a Tristan!