November update and Good Times

So it's been over 3 months. Probably time for an update.

Seems like the only time I have to update is when one of the kids is in Calif for a heart checkup or biopsy.  Well today, Gage had his scheduled and planned 3 month biopsy.  Nothing to report there, (which is great)!  Heart pressures look good and will get rejection results tomorrow.  Lindsey and Hunter also came with us, but no checkups for them. Lindsey only gets biopsy's once a year!
There has been NOTHING to report for any of our heart kids for the last 2+ years, thus the reason for the lack of blog updates.

In other news (if you feel like reading on) life keeps movin' forward:

Sierra is on a full time mission for the church.  Because of her obvious health condition, she was assigned to the San Jose mission.  She was originally assigned to the South Carolina mission, but her dear ole' dad spoiled the fun and called Salt Lake to make sure they had read ALL the medical notes in her file.  After further review and understanding of her file, they reassigned her here to Calif so she can be close to her medical team for checkups, and any other unlikely events.  All reports say she is doing great.  We haven't seen her on this trip, she is currently servicing south of San Jose.

Megan is lovin' it at Utah State. She seems to really be jumping in to the college life.

Lindsey Lou is now the oldest and 'most mature' in your house.  She is embracing the teenage years with all it's drama.

Hunter is in 8th grade and is also learning much about early teenage drama.  I am coaching his junior high basketball team.  We have 28 kids out for basketball.  For me, that is a LOT for an A team and B team.  Some of the kids are there to get out of PE, others are there for the love of the game.  Hunter said the only way I could make the practices any more difficult is if I personally insulted the kids individually in front of the team.  I haven't done that, but do work them pretty hard.  I am actually really enjoying coaching the kids

In mid-August, we went on a challenging but dang fun family backpacking trip up into the Eagle Cap Wilderness.  That was the first time we have been able to do something like that.  Our kids loved it!! We hiked to Traverse Lake then up to Wonker Pass.  We wanted to do this before our older girls went off to college and mission, and while Gage is healthy enough to complete a 'real' hike.  This trip was no joke one the best things we have done as a family.  They liked this trip better than other vacations we had been on.  There is something to be said about 'doing hard things'.  I believe kids need these kind of experiences and learn to do hard things.

That's it for now. Once Gage is done here at the hospital, we are hitting the road for Oregon.

Till next time
Jason

Elk huntin boys

Aggie football game against BYU.  

Sierra's MTC companion is serving in Palo Alto.  Fun to see her and hear how she is doing 

 Our girls before college and mission.

Going Home

Just a quick update.  Lindsey has been pretty boring the last 2 days.  Which is good.  She has stayed in sinus rhythm, even after taking her for walks up and down the stairs.  Last night we went to the new hospitals teen room and hung out for a little bit and  then explored the new hospital until her nurse came looking for her. Her favorite night nurse was on last night (Riza), which made our stay.  The only exciting part of this admission for her has been seeing all her favorite nurses from the old "Lindsey" days.  We are so glad things are going better and are ready to enjoy this last week and a half we have to spend together as a family before the oldest 2 girls start heading their different directions. So sad, as our family of 7 goes to 5.

The infamous Riza 

Fun watching the fog come in over the mountains in the evening.

August 1st - Happy Birthday Megan

Lindsey had a pretty uneventful day yesterday.  Her appetite is slowly coming back and she seems well enough to wear the battery out on her phone.  Her good friend Quinton and his family came by for a visit yesterday, which she enjoyed.  Thank you Collins' for taking time out of your vacation to hang out with us.  Lindsey slept well last night and went down to the cath lab at 7:30 this morning to get the pacer wire removed.  All went well and she has continued to stay in sinus rhythm.  They will most likely watch her for another 24 hours and then release us (fingers crossed).  However, she will be able to be monitored on the step down unit.  What we knew as 3 West but is now called PCU 200.  I asked the doctor how likely is this to happen again or happen suddenly while we're out hiking in the mountains?  She said that she could easily go into it again, but it wouldn't be suddenly it would slowly come on.  Lindsey and all transplant patients' conduction system in their hearts are fragile due to the amount of biopsies they receive.  She does not foresee this happening in the next year or so, however, if she were to have coronary artery disease it would most likely return.  Just a little something to put our minds at ease (eeek). 

Summary, she is doing great and we will most likely get released tomorrow.  Happy 18th birthday to Megan.  She was really excited that we were all going to be home and together for her birthday.  Looks like we will just have to post pone for a day or 2.  Sorry. 

Wednesday Update

Yesterday Lindsey was in "sinus rhythm" and did well with the Isopro IV medicine off until about 3:00 pm.  Right as Jason and the kids were leaving to head back home to Oregon.  Originally they kept her having nothing to eat because they were going to take her to the cath lab and screw the pacer wire into her heart and correctly place the wire.  This would require her to go under anesthesia, so they didn't feel it was necessary to do that.  She went back into a 2nd degree heart block (only 50% heart beats are going through the communication) at 3 and they took her back to fix the pacer cable at 3:45 pm.  The process took about 2 hours. All went well and they never did have to start her back on the Isopro medication.  This is the medication that is like a constant adrenaline rush, that made her nauseous, shaky and feel pretty cruddy. She came back riding the pace maker on and off.  It took her a few hours to wake up, but she was already feeling better.  At about 10 pm she flipped back into sinus rhythm and stopped riding the pacemaker.  She has been in sinus rhythm ever since and is feeling a lot better.  We went for a walk around the unit (2 laps) and it went well.  We also sat out on a patio on the CVICU unit which she enjoyed.  Mostly because she could sit in the sun and make sure her hard earned tan didn't completely go away.

So, now what is the plan?  Have her up and moving a lot today and make sure her heart doesn't flip back into a heart block.  They will keep the pacer wires in until tomorrow and if she stays in sinus rhythm they will remove the pacer wire tomorrow.  This will again require anesthesia.  Just as we are getting her to eat a little bit again, she will go NPO (nothing by mouth) at 2 AM.  Then we could possibly go to the step down unit and be monitored for another 24 or so hours.  This is IF everything goes well.  Then hopefully home.  Poor Megan has yet another birthday that we will not be celebrating ON her birthday.  Hopefully she can wait just one more day and celebrate on the 2nd instead of the 1st.

Lindsey update, Tuesday 1:30pm

What a lousy night!  To help combat the heart block (lack of electrical communication between the top and bottom of heart), they put her on Isoproterenol, an IV drug with rough side affects.  They had tried to use the pacing wires through her neck, but the wires were not connecting to the heart properly.  With the improper placement, she was getting electrical shocks in her abdomine and diaphragm rather than to her heart.  Incredibly painful.  After that unsuccessful try, they went back to the IV drug.

So all night, and I mean ALL NIGHT, she was awake, moaning,  nauseous, vomiting, shaky, highly emotional, not able to rest, and all around miserable.  Very LONG night. Reminded me of the good 'ole '3-chair-combo-days' back in 2012.   Around 7:30 this morning her heart was able to handle a decrease in the IV drug, so they decreased the IV med from .04 to .03. With that small adjustment, she started to perking up.  This morning she still has not eaten and has had to take her rejection meds IV, but is acting much better.

Here's some good news.  Found out she got a ZERO on her biopsy.  NO rejection!! That is great.  So  all this is recovering from an injury, rather than a poor heart heart condition.  I have been impressed Lindsey has taken this a well as she has.

Speaking of good news, we had clinic for all the other kids,  Gage, Megan and Lindsey all had perfect echo's and checkups.  Nothing to report there.  As for Sierra, she got another zero!!  This means all the checkups went as good as possible.  Thank goodness!!

At around 2:00 pm today she will be going into the operating room to have the temporary pacemaker wires more firmly attached to the right ventricle.  They will put her under general anesthetic to place the wires.  With the pacemaker wires properly placed, they can hopefully discontinue the IV drug so she can get some rest tonight.   The hope is she doesn't need the pacing for long, but no one knows how long she will need it. Could be a day, could be a week.  Once she doesn't need the pacing from either the IV or the wires, she will have to be here at least 24 hours to make sure the heart block does not return.

Right now the kids are all playing charades waiting for Lindsey to go in .
So there you go.  You know everything we do.

I will be heading back with the kids today or in the morning.  Stacy will be staying here with Lindsey until she is ready.
later
jas

They just dropped the IV to .02 and doing well!!
   

 Her favorite 'Shannon' from the 'ole days.

Normal August checkup??

We are back.  We have had a great and very uneventful summer so far.  Been doing plenty of 'normal' stuff; reunions, sport camps, ranch work, little vacations, all-star games, college prep etc.  We can talk about that later.

For now, we are checking in from LPCH at Calif.  Unfortunately a routine biopsy has turned into an admission into the CVICU!!  What is up with that?!  So here is the deal.

Sierra and Lindsey had their annual biopsies. Sierra did great.  Pressures look good, coronary arteries look good, rejection results tomorrow. Lindsey on the other hand has now been admitted! I guess during her biopsy they 'bumped' an electronic node which is part of the electrical system communicating between the top and bottom portions of the heart.  That 'bump' has thrown her into Stage 2 heart block.  This is similar to what happened to Gage, but Gage's was a complete heart block (Stage 3)  where as Lindsey's is a Stage 2.  It has been getting crazy since about noon today, but as of 7:00 pm she is still in the heart block rhythm, about between 30-50 beats per minute (normal is around 90-100). She has had pacer wires put in through her neck to help pace her heart.  About an hour ago they added an IV med to force her heart into a sinus (normal) rhythm.  They were taking her back to the Cath Lab to re-position the pacer wires but have been able to resolve here in the room. I have been in this business long enough to know that where more and more doctors, techs, nurses and equipment enter her ICU room, they are taking her condition pretty seriously!
 
What they have told us is that once the bruising goes down in her heart (from being bumped), which could take 24-36 hours, then the normal (sinus) rhythm should return.  Her heart pressures, and coronary arteries look good, and her heart rhythm was normal going into biopsy.  So they don't think it is a heart failure/ rejection issue.  But as a precaution they did give her a dose of steroids to fight rejection, IF that is the case.  Results just came in and she is not in rejection.  She received a ZERO on her biopsy.

As for how long we will be here, time will tell.  If I was a betting man, I would say I will be coming home with the rest of the kids tomorrow, and Stacy will stay here with Lindsey a few days to get this ironed out. 
All-in-all we will know a whole lot more tomorrow, but for now they are watching her CLOSE tonight.
Speaking of tomorrow..  Gage, Megan, and Hunter all have their annual checkups.  This includes echo's, lab work and clinic visits.  We are 'assuming' they will all be fine.  Best case... this time tomorrow we are ALL loaded back in the suburban heading for Oregon.  Worse case... who knows?? 
As always, if it gets crazy-r, we will let you know.
Till tomorrow,
Jason

Lindsey's good friends from Calif, Kirtana, Kiera.  

 Yeah, that's Quinton from Jordan Valley.  How these dang boys show up I DO KNOW!

 Merrill reunion time

 yah, that's Lindsey Lou

 Megsie and her all star team

 Check out Gage and Axelrod over in the shade, while Lindsey is 'slaving' away.

We helped chaperone Megan's senior trip.

 Prom back in may.