Jason and Stacy Clan: Day 194, Hospital prom

May 21, 2016

Heading back to Oregon so time to update the blog. This time I am heading home on a Saturday afternoon rather than Sunday. I need to get home to help on the ranch and to go to church tomorrow. This last week was all business as usual, but there was a lot of business to report on.

11) Sierra’s biopsy. She had biopsy this last week. A little different result than we are used to. Her heart pressures are down slightly and her coronary arteries look good. Those are good reports we don’t take lightly. The next day we got the biopsy results. ‘Inconclusive!’ What is that suppose to mean? I guess there was a new fellow (at the direction of Dr Perry) doing the procedure and 3 of the 5 heart samples were not good or not done right, or somehow contaminated. The 2 samples that were good showed zero rejection. That is good!! But they cannot give her a ‘zero’ because the other 3 samples were bad. Soooo, they are going to leave her rejection meds the same, drop a few other meds, and biopsy again in 2 months. That means Lindsey and Sierra will both have biopsies in July.

2) Gage’s HeatWare. Yes, we have something to report on good ole’ Blackwood. Over the last week the port that connects the controller in his backpack to the his heart pump in his chest has been loosening. We told the nurse practitioner and of course they wanted to get it changed out. Stacy took him in, they hooked him up the monitor, prepared the new controller, gave Gage an Ipad to play with, and started changing the connections. After about 30 seconds Gage got light headed and acting really funny. Come to find out, the heart pump does not start working if the monitor is plugged in first. Once they unplugged the monitor, the pump started working and Gage perked up. Goes to show they are still learning about the devise and also how much Gage depends on the HeartWare. Gage really is doing well, but not with out Blackwood strapped to his back keeping him going.

3) Golden State Warriors. Occasionally, the RMH receives donated tickets to professional sporting events. That is how we have been able to go to SF Giants, and 49er games. Still want to make it to a Raider’s game. Anyway, 4 tickets came up for GS Warrior’s playoff game against the Oklahoma City Thunder. We jumped on the opportunity and had a great time.

4) Hospital Prom. Last night was the annual hospital prom put on by the LPCH school staff. It is a huge production to put on and involves over 150 volunteers. For the last 2 weeks Stacy has been making decoration while sitting with Gage at school. The activity is more of a carnival rather than a prom, but all the kids gets dressed up and have a great time. I was very impressed with the school staff working so hard to put it on. No where else can you find that kind of atmosphere; you have kids of all ages and all types of medical conditions, with parents, nurses, doctors, college age kids, volunteers, and music DJ’s ALL having a good time. There were games, activities, face painting, loud music, dancing, good food, and awesome decoration. The theme was an African safari. I wanted Stacy and I to go dressed in full costume as Tarzan and Jane! That would have been awesome. But it didn’t workout so maybe next time.

Alex asked Sierra to the prom and were both excited for it. However, Alex had a major complication from a biopsy and was hospitalized. He had been on a ventilator for several days but was able to get well enough for the prom. Needless to say, Sierra picked up Alex from the CVICU in a wheel chair and they had a great time. Stacy and I are still ‘Team Alex’.

5) Move to the new RMH. Still planning on moving to the new RMH but it keeps getting delayed. They are still working thing out and will let us know when it is ready. Our room will be smaller than our current room so we are in no big rush.

6) Hunter’s Little League. Hunter’s season is over. It was a great experience for him. For the post season, it is a double elimination tournament that takes a few weeks to run. They lost the first game, won the second, and had a great game 3^rd game. In that game it was the bottom of the 6th, score was 8-6 us, and the other team was batting. Bases were loaded, two outs, and Hunter was in right field. Up to bat comes their hard hitting left handed batter! For those of you who don’t know baseball, left handed hitters generally hit to the right field area (Hunter’s spot). Stacy and I start praying, yes we pray for Gage, but this time it was for Hunter! Please don’t hit it to him, please. Whap! Hard hit just off the 2^nd baseman’s glove between right and center fields. Hunter couldn’t get the ball fast enough and they scored 3 runs. Hunter felt so bad and the tears started to fall. Not much we could say to comfort him as we made the slow long walk back to the RMH. Even Lindsey tried to comfort her brother, but to no avail.

7) Nathan and Leslie Kerns. Had a fun visit from our good friends Nathan and Leslie Kerns. They are driving from Seattle to San Diago. Long drive with 4 kids. Anyway, it was nice of them to stop by for a visit. Megan had a basketball game so we were all able to go and have a good time. To bad Megan’s team got beat.

8) Hunter had his end of year recorder concert at Nixon. Of course he did a great job, it is impossible to have ‘bad’ recorder concert, right? They did have a 5^th grade orchestra. Now they were amazing. I guarantee it those kids come from ‘Tiger’ parents. (You would understand if you read the book about the ‘Tiger Mom’).

9) Megan and Sierra had their final year-end band and choir concert in the new PALY auditorium. $29 Million PALY auditorium. Coming from Powder Valley High School, it is hard for me to understand those kind of numbers. Of course, Megan and Sierra did great. (What else would a parent say)

10) Summer is fast approaching. School gets out June 2, so Stacy and I will be changing everything up to make it all work. We will have kids spread from Calif to Oregon. We will figure it out, but not yet. And just when we do ‘figure it out’ the call will come.

So here is to Day 194. I have a busy week in Oregon, hope to be back for Memorial Day. Till next time. Thanks Dave and Beth for the ride home.

Jason