Feb 22, Sunday

Been a while since we updated. Lindsey and Sierra are both doing well. They have both had several blood draws to check various levels and they both seem to be doing well. Sierra's swelling is almost nonexistent, but she is still taking Lasix 3 times a day. Lindsey's levels seem to be stable...finally, after weeks of adjustments.  Other than that we have been busy with 'normal' stuff.

Last weekend for Lindsey's 1 year anniversary, we went to a cabin over near Wallowa Lake, then to a fund raiser event at an Enterprise basketball game. The Butterfields did a great job! Thank you for a great and relaxing weekend.

This week has concluded the crazy schedule with everyone doing sports.  Hunter had his last game, then had the final party on Tuesday.  It was fun, some of the parents played basketball with the kids on the team.  Hunter was really bummed it was over.  However, baseball is a month and a half away and he and Gage are looking forward to that.

Lindsey's last game was on Thursday.  Stacy did a good job managing that. The last few games the team had really improved and it was really fun to see them improve.

Megan played in the Huntington tournament on Friday and Saturday.  Their team has been undefeated this year.  The North Powder boys and girls won the tournament.  It was a fun season to watch.  The girls all did well, it is sad to see the team break up as some of them move up into high school. 

Now, Megan and Sierra will continue on with club volleyball.  They have been enjoying that.  Their first tournament is this Saturday.  Our January and February schedule was crazy, and we knew it was going to be.  We had signed up 4 kids for sports with 3 of the 4 doing 2 different sports at the same time. However, we thoroughly enjoyed every minute of it.  We thought often about where we were a year ago and the circumstances we were in then.  It made watching our kids in their various activities that much more priceless.  To have it so that ALL of us could go to each others games and support one another was awesome.  It was so great to see them all succeed and enjoy being kids. 

 Took the kids up to see the Klondike Derby up near Anthony Lakes. The snow is 7-8 feet deep. The Boy Scouts made some awesome snow shelters.

Feb 12, One year ago right now

Since last May, I have been following our blog postings each day from 1 year ago. Tonight, one year ago, on February 12 around 6:30, was the call we had been waiting for. It's pretty neat to look back and remember the emotions surrounding the events of last Valentines day, and all that went into it.

Interesting, but I remember which clients I was working on when Stacy called me at my Palo Alto office. Just so happened I was working on the same client today, one year later.  I remember telling one of the law partners who I didn't know the good news. He was the first person I saw, so naturally I had to tell him.  Then the announcement to Lindsey, her excitement, screaming, and tears as she whispered, "I did it Daddy, I did it".  Then the long 36 hour wait..... 

This is a special time for our family. The thoughts of the donor family come to me often, especially now.  I wonder how they are coping, I pray God will comfort them.

We are mostly back to normal now. School, sports, band, work, etc. All the 'stuff' that goes on in livin', but tonight we are a little more thankful to have that opportunity.

Feb 9, Sunday afternoon

Nice to have everyone home. Stacy and I comment often how much we still don't take being home for granted, especially after this last week.  Lindsey is still recovering from her bug, mostly diarrhea, low appetite, and low energy. Other than that we are back to 'normal'.  Spent most of Saturday, from 9:00 to 4:00, coaching or watching kids play basketball and volleyball. 

We have had some really good snow storms lately. There is about 18 inches in our front yard right now. Today we started building a snow fort, but then got distracted  by a snowball fight (which I won of course).  Sierra's swelling is hangin' around but is much better than before.  Lindsey dropped 5 meds from her regiment, that's all good.

Tonight kids are doing homework and making valentines,

Praying for Luke Jakobson, Tyson and Amanda's (my cousin) little boy. He is going in for brain/spinal surgery in the morning. Be strong Amanda.

Till next time.
Jason

 Fun time in the snow.

 Sunday night doing homework, valentines, and meds.

Feb 6, A Big Fat ZERO!!!

Stacy here.  Lindsey's biopsy was a zero ( big sigh of relief). She was discharged this morning and was even able to do hospital school. She was definitely ready to get out of that room. I had to walk briskly to keep up with her on the walk to the school. We got to catch up with Amanda and Annalyce. Annalyce was here for clinic, she is 15 months post transplant and our fun little buddy.  She went to school for the last half of school with Lindsey, just like old times. After school we went and visited 3 West. She loves seeing that part of our extended family.

Because Lindsey received a zero on this biopsy she gets to come off 5 medications. She is very "sad" about that. Lindsey gets to see her good friend Sadie this afternoon. Then we are flying home tomorrow morning, after a quick blood draw at the hospital. We are ready to go home. So a summary of our stay here. Lindsey had a viral  bug that was going around at school. She had no rejection and is feeling a lot better.

 Liz and Nate sporting the yellow gear to visit Lindsey. 

 Had a visit from Riza last night. Lindsey was very excited to see her.

 Lindsey's friend from school brought her and Annalyce some heart sugar cookies. 

Some of the 3 West crew. The others did come and visit her in the CVICU.

Feb 4, Just a Bug

Stacy here.
Lindsey is acting a lot better. Her Echo was normal. They are not concerned with rejection now that they have seen the whites of her eyes, and ran their tests. She hasn't vomited since 6:00am yesterday but has been medicated with anti nausea meds when her stomach hurts. She had needed less and less of the medicine. The diarrhea is still there but not as bad. Her kidneys took a little hit with the dehydration so they wanted to push her biopsy to 2 weeks from now.  That is when I presented by case.

Lindsey and I were originally planning on coming to California this week with a scheduled biopsy tomorrow. This biopsy was going to be an annual, where they go through the groin and place dye contrast so they can see the coronary arteries. However, the dye is excreted by the kidneys. Thus they did not want to put the extra stress on the kidneys by doing the annual biopsy. Rather than come back again in 2 weeks we compromised. She will still get her biopsy tomorrow but it will not be the annual. She will get her annual in May with Sierra.  That means we can home later this week (we hope).

We have had visits from many of our 3 West nurses and staff. We were hoping to go up there tonight but it doesn't sound like it is going to work out. Lindsey is really bummed. She was hoping to have some of her old nurses. Biopsy tomorrow (Wednesday) at 10:30am. See where her Labs are and possibly get discharged that afternoon. Everything is good. Thank you Jason, you are so good about picking up the pieces. Love you, be home soon.

 Lindsey loving the popsicle.

 

Enjoying the view of the construction. It has progressed quite a bit.
(This was the same room she was in when recovering from the Berlin back in July).

Feb 3, 9:30 pm Lindsey update

2:30 pm.
I still refuse to get worked up over this.
But.....flu and strep both came back negative, kidney function poor, blood pressure low, and Calif wants an echo today.  Soooo, we just signed the consent for Life Flight to Calif.  Stacy drove home to get some clothes and drop off Gage.  They will probably be flying out in a couple of hours.  They were scheduled to go down tomorrow anyway, so this just upped it a day.  She looks better after receiving the 500 cc of IV fluid, and has slept for several hours now. She hasn't vomited since this morning. 

So lets get her down there, have them check her out, do the echo and biopsy as planned, then go from there.

9:30 pm.
It was snowing here so the Life Flight airplane couldn't get it. They ended up driving her to Ontario by ambulance, then onto a plane from there. They landed in San Jose around 8:00.  While waiting in Baker they started her on solumendral (sp), the steroid they use for stopping sever rejection. Not that she has it, but they started the steroid just in case it's there.  Just received a text from Stacy, "In Room 47 where she was post Berlin where the sun would come in the window in the morning. And the same room she had her seizure in. Dr. Axelrod is on.  Getting ready to do the echo now."

Sierra has blood draw tomorrow. Her swelling looks much better.

That's it for now.
As I stated earlier, I refuse to get worked up over this.

Feb 3, More 'New Norm'

Stacy and I are adjusting to this new norm we have.  Sierra's swelling is still hangin' around. No real change since last week.  Taking the increased meds. Still has the swelling, but not as bad as it was. 

Now it is Lindsey's turn. Last night it hit hard.  Started vomiting around 9:30, and continued every 1/2 hour all night along. This morning it backed off to every couple of hours but she is still really sick. We are assuming it is a flu virus given how much sickness is going around the school. But we have to take it more serious that just the 'flu'.  She needs to keep her meds down and we need to rule out rejection, (which can act like the flu). She has also lost 6-7 lbs, which she doesn't have to loose. All the prednisone puffiness is gone and she now reminds Stacy and I of the pictures from June 2012, thin with sunk in eyes.  So, as we speak, Stacy and Lindsey are at the ER in Baker getting a chest x-ray, blood work, and IV fluids. California knows and is monitoring.  Stacy and I refuse to get to worked up over this. It's the flu and it will pass!  This also delays their trip to Calif this week.  She can not be going into biopsy with a fever, and vomiting.  So that will need to be rescheduled.

So now, we get her better, then spread it on down the line. Of course we are cleaning like crazy around the house, but the other 4 will probably get it.

Last Saturday was a blast! We had 5 games to attend, or coach.  Hunter had a double header, Megan had a double header in Union, and Lindsey had a volleyball game.  Stacy and I divided and conquered. In one of Megan's games, she did a pick and roll and bounced off a Union girl who was set.  It was really funny. She said it knocked the wind out of her and hurt her jaw.  The other girl never moved.

Hunter has a game tonight.

Hopefully things go well with Lindsey Lou.
Check in later
Jas