Feb 23, Saturday, Keeping Up With Lindsey

Stacy here, Jason went home today putting me in charge of updating. Lindsey had another excellent day! We played 3 games of Sorry, played Wacky 6 in the Sobrato room, hide and seek on the 3rd floor loop, friends visited and a walk to the Lucile Packard cafeteria. All unaccompanied and on our own. This has been REALLY weird.  She had one of her favorite nurses, Susana.  We told her maybe she should come with us so we can gradually break into this freedom.  All of these activities were done without a single monitor on her. CRAZY!!! The doctors are talking about letting her go home at the beginning of next week.  They want to make sure that her blood pressure is under control and her Prograf (one of the immunosuppressive meds) levels are where they want them.  Her levels have been really high. They want them between 10 -15 and today they were 16.9.  Lindsey wanted to take the stairs up from the cafeteria, so we took them from the ground floor to the first. She did amazing. Slow and steady.  Her VAD sites are healing well. They have to be packed with gauze once a day, which she is not happy about.  All-in-all, she really is doing awesome.

She is nervous to go out of the hospital.  I can't say that I blame her. For 8 + months she has adapted her life to this hospital. The nurses, doctors, therapists, and school ( which she will continue) have been Lindsey's world. Now we are coming to the part where we say good-bye to that. There are a lot of mixed emotions. She is nervous and scared to leave, but very excited to be with her family again ALL the time.

Jason made it home safely with his mom.  He was really dragging his feet to leave.  He wants to be a part of this transition, but it IS tax season.  Hopefully he can find the means to focus on work this week. We will miss him. He sacrifices so much for our family. He is an amazing man!



Jason here. While I was on the airplane traveling back to Oregon I prepared some additional thought but haven't had the internet.  Since this is our journal I wanted to add it in the proper section.

Saturday, February 23

Another great day for mixed emotions, all good but mostly hard to explain.  Spent the night on 3 West with Lindsey. It was very quiet, nothing was humming, beeping, turning, thumping or alarming. Lindsey woke up a couple time to use the bathroom, so as usual I go up to help, but I just stood there.  There was nothing to help her with.  We both thought it was kinda weird.  Last night we played a game of ‘Plants vs Zombies’ together on her ipad like we had done for the last 8 months.  It was one of the rituals we did after her walk.  I will definitely miss that one-on-one time with my daughter.   Now I am on a plane heading home for week to see what is going on in the real world.   The office has done a good  job of keeping my things going. 

Stacy and I are both excited to have her leave the hospital soon, but it is kind of sad in a twisted sort of way.  For 8 months less a hand full of days, Lindsey has had a ‘Daddy-Daughter’ or ‘Mommy-Daughter’ date every night, including sleep overs, evening walks, music, games, stories, friend visits, foot massages, and mostly just time. When I get back from Oregon it’s going to be different, a good different, but different.  I never thought that I would miss that part of my life.  Those are turning into good(?) memories.  Memories I hope we NEVER relive but good memories none the less. (I know that sounds weird)

 You can tell Lindsey is nervous to be leaving the hospital.  Again it hard to explain, but there was a real security she felt knowing there was ‘something’ there keeping her okay, a nurse, a monitor, a Berlin, a parent,  something. Now she will be on her own.  (Not really on her own, we will be watching her like a hawk, but that is how she is feeling).  Yes it is good and wonderful, and a blessing from God, but this is an adjustment she having to process.

Stacy and the kids are now in the Sobrato Room playing Wacky 6 and other Games. Stacy’s Mom, ReNae, is flying in to spend the week here while I am gone.  I would love to be there as our Princess ventures out, but I also need to get home for the busy season.  Stacy and ReNae will have their hands full as Sierra gets her treatments, Lindsey has her appointments and biopsy, Megan has her games, and the boys have their ‘whatever’.

As for today, my Mom left on an Alaska flight out of San Jose to Boise. Should be there around 2:00. I kept moving my flight back during the week and now leaving out of Oakland on a Southwest flight. My brother was going to pick us both up in Boise around four.   Just for a little drama, part way through our flight they had to turn around and come back to Oakland for some maintenance.  There were a few people freaking out, but there was no major event. So now my Mom and Uncle Justin will have to wait a couple of hours, really no big deal.

Interesting in rounds on 3 West, it’s the same ole' doctors and nurses, but now they are watching a whole new set of issues. There is no more talk of blood thinning, INR, cannula site, etc. Now its heart function, rejection med, blood levels, and blood pressure.  Once they have the blood pressure and rejection meds stabilized and no new issues pop up, she should be released to the RMH. Once at the RMH she will still have weekly clinic appointments, echos, biopsies, IV treatments, and school. So we are never that far away.

We have been keeping our eyes open for some dude pulling their kids around in a nice ‘gently used’ bike buggy. What we think really happened is there are a few homeless people that live a short distance away, like ‘Hunter’s Hideout’.  We think we are going to see the buggy on a street corner with all kinds of treasures in it. But haven’t seen it yet.

Till next time