Next morning

Bit of a long night. Pain is the biggest issue they are dealing with.  He is doing good and recovering as expected, but hey give him a break, he just had his chest cut open.

The pain meds are making him nauseous and has vomited a couple of times.  Still hasn't eaten anything, just doesn't feel like it.  He is drinking a bit of water and has gotten into a chair this morning.

I tried to sleep here in the ICU in the good ole' three-chair-combo, but my back just couldn't take it.  So I slept upstairs in the Sabroto room next to 3 West between calls from Gage's nurse.  Stacy went to the RMH with Sierra to take her to the activity this morning.

Sierra is off with the young women's group to go river rafting today, should be really fun for her. Lindsey is still with my sister Garrity in Princeton, Oregon, but will be going home with my parents.  She is getting pretty homesick for her parents.  Megan and Hunter are home somewhere doing something.

Might get moved to 3West if things go well. Be really nice to get that chest tube out, but it is still draining quite a bit.

Other than that, the pictures really tell the story.....

After Surgery

Well the surgery went very well. They did NOT have to go down the traeh nilreb route, thank goodness.  He has several IVs for pain, a little bit of Oxygen, and that is it. They have 5-6 IV drips on stand by in case he needs them but so far they are just sitting there. He sleeps most of the time, but when he does wake, he wants a drink of water or ice chips.  Pain is still pretty high, but they are managing that pretty closely.  Stacy and I are preparing for a long night as the sleepy meds continue to ware off.  

So this new devise he has does NOT improve the heart, or make it beat any stronger.  His heart disease is still slowing progressing.  The devise paces the heart as needed, and delivers a shock to the heart in the event of a V-tach, or irregular heart beat.  We need to be educated as to how this all works. How will the devise know there is an irregular heart beat? How big is the shock? How long does the shock last?  How will Gage react? What do we do if it 'goes off'? How long will the battery last?  Katz said they tested the devise in surgery.  To do that they induced his heart into a V-tach to see if the devise would detect the rhythm and shock it back, which it did, so that is good. So now we just need to learn how and when it will work.

For now, Stacy went to the RMH to regroup and rest and I am here with Gage.

Thank you all for your love, support, prayers, concern and comments.  We value each one. This morning was pretty rough on Stacy and I as we were trying to prepare for worse.  We both know his heart is getting worse, and we are just not ready yet to start this all over again,  That will be a story for another day...

In other news, I am blown away by the fires going on back home.  Crazy stuff.

till next time,
Jason

He is in.

Emotional morning so far.  Up at 5. Gave him a shower with special wipes.  Walked over from the RMH at 6 carrying Woody the Bear.  A lot of tears this morning from Gage, but was doing okay by the time we checked in. Dr Katz and Williams were both there in the check in area.  Both of them reviewed the possibility of having to put Gage on either the Berlin (or 'triah nilreb' as we all know and love) or the Heart Ware depending on how he does.  I asked Katz to again explain why we had to do all this, when Gage has been doing so well. He emphasized the seriousness of the 17 beat V-tach and how fatal that could have been.  Another run of those irregular heart beats could kill him.

Stacy and I were pretty emotional as they were explaining this and wheeling him back.  Let's be honest, we both broke down.  The remote thought that he could come out on the Berlin is hard to bare. 

So now it is 10:45, it's been over 2.5 hours. Pam, the lady that works here in the surgical waiting room, called to get an update from the operating room and was told it was going okay. I guess that is good enough for me.  I am guessing no news is good news.  

It's going to be hard to see him all wired up with chest tubes giving how cute and energetic he was going it.  

Till next time

jason

 

The day before

Jason here. Tomorrow, Friday, is Gage's surgery. Had pre-op today including blood work, xray, and meeting with doctors and others.  There were a few things that rattled us a bit.  Of course I understand they always tell you and prepare for the worse case senerio.  Never a fun discussion.

Here is what they will be doing. Opening this chest up all the way (not just part way like they did with his first pacemaker), removing the pacemaker and the 6 leads (wires) to the heart. Next putting in a new pacemaker / defibulizer which is about 2.5 times as big. He will get 6 new leads put on to pace the heart PLUS the 'coil' and related lead to shock the heart in the event of V-tach, or irregular heart beat.  The coil, which is not small, will wrap around the back side of the heart. Needless to say, he will be wired.  Procedure should take about 2-3 hours starting at 7:30 am.  When he comes out he will be on a ventilator, 2 chest tubes, and other IV's needed.

We were coming to grips with all this when Dr Hollander added one more comment. In preparing for the worse case senerio, Seth brought up the words Berlin Heart.  My heart just sank.  In the event his already sick heart can not handle the above trauma, they may have to place him on the Berlin or a similar devise called the Heart  Mate.  And just like that we would be on the list and NOT be coming home.  They do NOT anticipate this happening. But his heart function is getting worse and his heart is larger....

Having said all this, I believe he will be just fine. Dr Katz will do a great job, and Gage will come okay. I still believe we will come home to Oregon next Wednesday with NO Berlin.  Next 24 hours will tell.

Right now all the kids are farmed out. Megan and Hunter are at Jake and Wendy's. Lindsey is at Aunt Garrity's, and Sierra is at Zengers.  Stacy is in reading a book to Gage and giving his some motherly comfort.  He is pretty nervous and scared.  He did get a blessing from Drew and I.  Gage wants his mom to hold his hand the the whole time.  We said absolutely, will be there when he goes to sleep and there when he wakes up.

In other news, Sierra got another 1a on her biopsy, with heart pressures remaining the same.  It would sure be nice to get zero with lower pressures, but will take the 1a.   Her antibody rejection is still zero. That is good!  Diabetes still hangin' around, so She will be taking her first insulane shot tomorrow. All in all, she is doing good. Got to love it.

Had a great visit with Shawn and George Stockwell from Alaska.  Shawn was here for biopsy and IVIG.  Today we went to the Winchester Mansion.  It is a 24,000 square foot home built in the late 1800's by Sara Winchester. It was a strange house.

That is it for now,
praying for a smooth day,
Jason

A few thoughts from the tractor.

Jason here. Few thoughts from Oregon. Gage and Megan have been here with me for a couple of weeks now.  Gage and I leave Wednesday for Calif for his surgery on Friday. Megan will be staying here with family as volleyball practice heats up. Hunter is with my brother Josh and Tara and their family in Idaho.  He has had a good time with his cousins, but is starting to get a bit homesick. His calls are coming more frequently.  Give our Calif appointments, we don't have an exact time for him to come home and that is tough on him.

Wanted to share (and remember) an emotional experience Gage and I had out on the tractor as we were baling hay the other day.  Up until a few days ago, all Gage knew is that they were going to check his pacemaker.  But you could tell he was getting suspicions of this so called checkup given the phone calls we were having.  I could tell he was ready for the truth when he asked in his big boy voice (which we don't see very often), "What are they going to do to my pacemaker?"  I explained the surgery he was going to have including going to sleep, cutting his chest open, taking out his old pacemaker, putting wires on his heart, and replacing the pacemaker with a bigger and better one. He started to cry a bit, but then said that was okay.  He asked, "will there be staples in my chest like Sierra?" I just knodded yes. Then he asked, " is it okay to have a big heart?"  At first I said yes it was good to have a big heart, it makes him big and strong. But he didn't buy that.  "No, is it okay that my heart is bigger than my body?"  That was when it got a bit more emotional. This time I just shook by head, no. "Will I have to get a new heart like Sierra and Lindsey?" "Probably... but not for a long time".  We talked a bit more about it.  You could see his mind processing it, and now ready to move on, for now.  After a few moments, he climbed on my lap and we went back to driving the tractor....

As good as Sierra and the crew are doing, it has been tough to be away from my dear wife and best friend and kids for so long.  I don't know other couples do it, but I know this guy missed is his wife and children.  Megan has been a trooper.  Many times she and Gage are here alone as I am out working at the office or on the ranch. You can tell she misses her sisters and mother.  We know how blessed we are, we really do, it's just tough to be a part for so long.  (By the way, I'm still bitter about missing out on the beach house, grrr)

Having said this, Gage and I leave Wednesday for our next adventure. Lindsey will be catching a ride back from Calif on the same day.  Probably good to see Hunter before we leave, so Tara is going to drive him to Pocatello, Uncle Jay we take him to Boise, and Aunt Wendy will bring him the rest of the way home.

Today, Stacy and the kids are with the Stockwell's playing around at Great America.

Till next time,
Jason and the Oregon crew.

           

A Date for Gage's Surgery

I will update on Gage first, as I am sure that is what most people are curious about.  He will have his pre-op appointment on the 13th of August and then the surgery to follow on the 14th. The nurse called yesterday and said that he could take his monitor off early so they could get the results reviewed before his pre-op.  Gage was really cute about this.  In clinic they told him that he had to wear it for 14 days.  When we got back to the RMH he quickly got out a piece of paper and wrote the number 1.  He said he was going to write up to 14 to keep track of when his time was up.  I'm not sure how well he kept that paper going once he got home.  When I called yesterday to let him know he could take it off, he was VERY excited, as this was almost a week earlier than they had told him.  All-in-all, he is really acting great.  Wish he would eat more, but that has always been a fighting battle.

Sierra had her appointment with the diabetic clinic on Monday.  They showed her how to test her blood sugars.  She is checking them 3 times a day.  She is not to change her diet or do anything different.  They want to see how her body handles normal eating.  The doctor will look at this information tomorrow morning and decide what treatments she may further need.  Whether that be insulin or diet.  So far, most of her blood sugars are good.  It's when she eats something sweet, like ice cream, it goes really high. Wednesday Sierra had heart clinic.  There was really nothing to change.  They are going to continue to slowly wean her down on her prednisone.  Hopefully, if all goes well with Gage's surgery and recovery, we can go home on the 19th.  No "set in stone" plans yet, it will just depend on Gage's recovery.

Lindsey will leave us on the 11th and return home with some friends. We had a fun visit from Lindsey's good friend Gelina.  She was being treated for leukemia the same time Lindsey was in the hospital.  They went to the hospital school together.  She looks great, it was so fun to see her and her family.  Jason and Gage will come here on the 12th.  Sierra will have biopsy and IVIG infusion next week.  The doctors decided just to give her and extra 2 months of IVIG to be safe, since her last heart was damaged by antibodies. We are good with that.

I forgot to mention, when Jason and the kids were here, we were able to go see Lindsey's friend Colette.  This was the day that Sierra was admitted for her bladder infection.  It was a good distraction for the other kids.  It was a really hot day and they needed to cool down.  The Vance's are a neat family and have been very kind.  Lindsey met Colette at the hospital school. Thank you Vance's for an enjoyable evening.

There was a question about testing for magnesium.  The answer is yes,  The kids have regularly checked magnesium levels.  In fact, both Lindsey and Sierra are on Magnesium Oxide. We appreciate all your love, concern and comments.  I know we will get through this and be able to return home soon.  Hopefully for a little break before the next wave hits.  Alyson,  it was so good to meet you and Madelyn this morning, you are both adorable.

Colette and Lindsey at the pool. 

The rest of the kids having fun. 

This is a random picture I took the other morning.  I was walking at the mall across the street and this mother duck and her ducklings were walking through the parking lot.  Very cute.