92, Gage's pacemaker

We are having a great day. Wish I was getting more work done, but right now my kids needs me. To catch up with everything, Tuesday was a good work day. We seem to have a lot going on back home. Just because tax season is over doesn't mean we are not busy. It has been good working remotely, but there are still times it would be nice back at the 'Mother Ship'.
Yesterday was Lindsey's biopsy. She did great, heart pressures good. Blood levels are good. Did the biopsy asleep, still not ready to make the jump back to doing the biopsy awake.  Got word today, regarding her rejection, or lack there of. That's right, she got another ZERO.  We love zero's! Since she has had good biopsy results, they are turning down her predisone, from 10 mg to 8 mg. They may even turn down her Prograf, another one of her major drugs. That's all good. Next biopsy for her will be June 12. On that day Lindsey will have a biopsy and IV treatment and Sierra will have IVIG. 
Right now (1:00 pm) I am with Gage. He is having his 3 month pacemaker checkup. He is still 100%dependent on his pacemaker.  Just talking to Debra and she was saying that this pacemaker issue with Gage is very rare. His sisters never had this problem, but for some reason his heart failure has shown it's self in both the weakening of the heart muscle (like his sisters) and the electrical function (his need for a pacemaker). As for how he is doing, he is eating as good as I have ever seen him. His energy comes and goes, but is mostly fine. Still complains of occasional tummy aches, but not as often as he used to. Still looking at replacing the pacemaker in about 3.5 years. Most devices can last 5-7 years but this Bingham kid is riding it pretty heavily.   Deb just lined me out with a portable device for Gage. When we are back home in Oregon, we can hook into a phone line and transmit data from his pacemaker. Cool little machine.
Then he had a clinic appointment with Dr Coffmin, a heart failure doctor. Basically she said there are no signs of his heart failure progressing. It is still there, but it is NOT progressing. She even said his heart has slightly reduced in size. That's great! Hey, I can handle the pacemaker issues if that dang heart failure keeps it's distance.
Stacy left this morning at 6:15 am for Oregon. She is there right now with her sisters and mother for a fun busy weekend.  She has the daunting task of going through the house, clothes, and stuff before the tribe arrives. They have grown out of all their clothes and I have left some creative 'piles' here and there. We both agree, it is such a strange experience to go to our Oregon home, how everything is just sitting there waiting. Anyway, they are having a great time. (They better be).
Tonight (10 pm) Lindsey is getting an MRI. They are checking to see if she has any lingering affects from the PRES seizure she had 3 months ago. There shouldn't be anything, but they need to check her out thoroughly before we can we can go. You could say it is part of their bucket list.
That's it for now. I've got control of this. Stacy better have a good time and not worry about us. Not sure what is going on tomorrow, but we got it.

She is out of here.



 

EkG and Optimizing his pacemaker (the green 'froggy' on his belly)

 She is going in.

 Notice the goggles and head phones for the movie she is watching.

 It's 10:30 and she is still in there.

With Dr Snyder, and her publishing party. Lindsey wrote a book about her experiences and Dr Synder had it bound. We had a publishing party with Jamba Juice's. It was good experience for her to give her closure.