11:50 pm.
Well it been a long 70 days on the transplant list. We haven't hit the magical 3 month mark yet. One of these days we will have the exciting news that a donor heart is available, but not today.
Lindsey still does NOT have the feeding tube back in. They are ok with her drinking her pediasures (4.5 today), pickles (only a few bites today), and a small bowl of spaghettios. She has lost a little weight, about a kilo, but having the feeding tube out and allowing her face, nose, throat and tummy to adjust back to normal is worth it so far. She had a dang good day. Went to both sessions of school and took good walks.
The Berlin machine has been acting weird the last 2 nights. In the middle of the night the alarm goes off and says 'Check left side pump and tubing'. It has done this 3-4 times a night. Lindsey actually sleeps through it and dear ole Dad comes flying out of bed. 2-3 nurses race in each time, grab the flash light and mirror and start looking over the Berlin, tubing, and machine. Each time they don't see anything. They have called the Berlin company and have sent data, but nothing yet. They did an echo and x-ray today to see if there is something wrong at the canula sites, where the Berlin inserts into the heart, to see if there are leaks, bleeding or other problems, but didn't find anything. They even switched the machine with the replacement, and the replacement also went off with the same error. So far they have ruled out the major problems, but can't put their finger on the solution yet. I guess I need some ear plugs. See how tonight goes.
It was the parent back to school night at Jordan Middle School. My mother took care of the kids (thanks), and Lindsey was on her own for a while. At Jordan I had Sierra's school schedule and Stacy had Megan's. We went around to their classes for a 15 minute presentation. We would go to period 1 (English), hear the teacher's presentation, the bell would ring, 5 minutes to find period 2, and so on. I don't blame Sierra for being a bit overwhelmed. Felt a lot like going to college with the spread out building and classes. I had to hustle to get to the next class. Megan stays in the same class all day and doesn't move around much. It was a great opportunity to meet the teachers and know what to look for in terms of homework, tests, and assignments. Sierra and Megan can do this. All the teachers know their situation and will help them anyway they can.
As we were walking back to our suburban we bumped into Dr. Dan Bernstein and his wife out on a walk. That was sure fun to see them outside the hospital setting. They live just down the road from Jordan.
By the time it was over we were getting phone calls from our little Princess wondering when we were coming back. She has a boy nurse tonight who she doesn't know that well and is not as fun as some of the other nurses. When I finally arrived, she had to GO! Boy did we hurry to get her into the bathroom.
Having the kids in school down here adds a whole new dimension to the waiting process. I don't know how we can support all (or any) school activities like band and sports. It was all we could do to go parent night and she was still in tears by the time we got back. Stacy and I both feel pretty strongly that we can do this. As long as we keep our priorities in check, all the other stuff is just stuff.
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11 comments:
Your family is doing great and you can definitely do it! My youngest has had some challenges (nothing like yours) and it has meant that our family has had to make some serious sacrifices to get him what he needs. We've had to constantly make adjustments--I've learned we just make it up as we go. You guys will be fine--as things come up you will know what will work and what won't and you'll be able to get everybody just what they need!!
Your amazing family will be able to do it because you are all have the same list of priorities. Your ability to record events should help the parent that didn't get to attend. On my desk there is a cute little sign, "I can do hard things, with the Lord." Our prayers continue.. we love your family so much!
"As long as we keep our priorities in check, all the other stuff is just stuff."
An amazing statement Jason. I took the liberty of reposting your comment on FB (check it out when you have time to sink-----yeah right) A joke for the kiddos (all of them)
Q: How do you stop an elephant from charging?
A: Take away his credit card
Continued prayers and love! Dale and Mike
YA for a good day.
I wonder if you can set things up so Lindsey has something to do while you are gone. I am sure being in the room all alone is NOT fun.
What about having someone from your ward come sit with her?
You are doing an amazing job.
i loVED this post!!! I love all the positives with school for the older girls and Lindsey Lou! you are right everything else is just stuff! and it's really not important. In Junior HIgh I didn't do anything extra curricular and I think I turned out just fine ;-) good job Bingham clan Emily
Grandma Bingham will like this one: What did the horse say when he tripped ?
Help! I've fallen and can't Giddy-up!
Life is always a bit of a juggling act in it's own self, but to add in all other things...really is just stuff to add to the list. A great way to think about it...just adds up to stuff...and so very true. Sometimes we as parents over schedule our own life, time, and child's life. I'm with Emily it's okay to not do these things and it's also okay to say "NO" (don't feel guilty!!!). Time is precious in everyone's lives' and spending time together is priceless!!! Logan can always call and talk Lindsey's hear off on the few days that Lindsey may need to hang out on her own...or better yet she would love to facetime her and for that matter all of you! :)
Thinking and praying that as the numbers of day add up they are still taken one day at a time and know that the Heavenly Father is with you each step of the way. Jason and Stacy you are raising some pretty incredible children and they are incredible because of all the love, support, and guidance you have given them. Keep it up and believe that all things are possible and that your miracle day is near. loves, hugs, and prayers for each of you--xoxoxoxo
I am finally back on line and settled after the move! I am officially back yard neighbors with Binghqm cousins! Glad to caught up on Lindsey's life- I've been having withdrawals! Love to all!!! Karen
You can do this, Jason and Stacy; and you are doing it fantastically! With all the prayers and support around you from family and friends, miracles happen!! We love you sooooo much.
Of course you can do this!!! Nick said the main thing is to keep the main thing the main thing (did I type that right). Just get that princess better, and everyone will survive. It is also a good opportunity for the rest of the family (everyone from Megan to us here) and friends to realize that stuff is just stuff. We love you guys, I hope today was as good or better than yesterday!
Thank goodness kids are so resilient. You've got great well-adjusted kids who will survive this crazy roller coaster ride called Bing's Life just fine. We're just glad you're all together and Linds is eating on her own! That's a giant step. The Yeck kids are almost done with their first week all in new schools and we are amazed at how well they have adapted. We sure love you guys! Praying for you all and especially Lindsey :0)
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