Gage Update - Happy Halloween

Gage started his day off really good yesterday.  He got up and wanted to go to the hospital school.  He was able to go, and after school got his face painted. Yesterday, is the BIG Halloween party at the hospital.  ALL floors set up tables for trick-or-treating and the hospital provides costumes for patients.  There is also a haunted house in the ground floor of the hospital, that if you remember, Sierra screamed very loudly when she went through it when Lindsey was here.  However, they did not want Gage to go to all the floors since he would not be able to be monitored on the lower floors.  Our good friend Alex came by with some gifts and candy for Gage.  Then, Gage got his Ninja Turtle costume on and he and Alex went around the 3rd floor trick-or-treating.  Which was enough for Gage.  He was done after his lap around.

After trick-or-treating, he just wanted to lye in bed and watch a movie. So, all was well, until the nurses came in to put a feeding tube in.  Gage is eating but not nearly enough to give his body the nutrition it needs.  Thus, the doctors want to start doing feeds at night through a feeding tube.  He was not a happy camper.  Luckily it only took one try to get it in, then lots of vomiting afterwards.  It took a little over an hour, but he finally calmed down.  He has not been in the best of mood since the tube was placed.  He was able to tolerate his feeds throughout the night.  He complained of stomach pain once around 4:30 this morning, but did not throw up.  The plan now, is to switch his lasix back to oral, start his oral meds back up that they were holding and prepare him for discharge hopefully on Monday.  They feel he is in a better spot then when he came in, and they may even let us go home for a little bit on the nightly feeds.  If all goes as planned, we will be able to go home possibly on Tuesday.  Who knows for how long, but we know it won't be for a long period of time and when we come back, it will be until transplant.

Meanwhile at home,  Megan is playing in the first round of State Playoffs for volleyball right now.  Really bummed I can't be there to watch this game.  Hopefully I will be there to watch the final game.  Jason is up at elk camp hunting with his buddies.  One of their party has gotten a 5 point bull elk, but he was not the one.  Windy, snowing, cold and wet, but having a good time.  In Palo Alto, Gage and I are dealing with sunny and upper 70's weather. I will take ours over Jason's.

Gage Update - October 29th

Over the last few weeks before Sunday, Gage has been showing classic signs of heart failure.  He has been cold, tired, no appetite, complaining of his stomach hurting, each time he does eat and only tolerating walking.  He was vomiting 1-2 times a week and was very pale.  I was very worried about him, so I called California on Wednesday last week.  They were concerned as well, and asked us to draw some labs.  The labs came back showing that his heart failure levels were climbing.  We redrew on Friday and they asked that we have him seen this week. 

So, to make a long story short, Gage and I drove down yesterday and he had clinic today.  On Sunday, Gage started acting better and has continued to act better throughout the week.  He has been eating more and has not complained of stomach pain or vomited.  With that being said, he had an echo, EKG, pacemaker/defibrillator check and an exercise study done today.  The exercise study is where they have him walk in between 2 cones for 6 minutes and they see how well he tolerates it.  He did pretty well on that test, he was able to walk the full 6 minutes.  His pace slowed a little about half way through, but he was able to do it.  His pacemaker/defibrillator check showed that he had to short episodes of v-Tach (quick heart beats) that only lasted for 7 beats.  These are short and don't do anything to him, however, they are getting more frequent.  His EKG was fine.  His echo showed that his heart was more dilated (enlarged) and the squeeze was weaker.  Usually they don't treat for a changed echo, but Gage is starting to show symptoms with the change in his echo. His liver was enlarged which is a sign of fluid overload and heart failure.

With these findings, they decided to admit him and give him some IV lasix to start pulling off some of the fluid.  They want him really dry.  If he tolerates this well, then they will look at making a med adjustment and possibly letting us go home.  While we are in the hospital, they are going to evaluate him for transplant and decide if now is the time to list him while he is still "feeling relatively good."  If they do list him,  they will list him as a status 2 and we will be able to wait at home.  If his symptoms return to how he was last week, they will admit him and start him on milranone.  Then, all bets of going home are off.  His size is a little bit too small to be able to do the new "heartware" assist device.  With this device, the kids are able to go out of the hospital and wait close by or at their homes if they live close.  Thus,  Gage's only option will be the Berlin that Lindsey was on, which means another stay in the hospital.  Jason summed it up well when he said, "So lasix, then milranone, then Berlin."  That is what we are looking at.  We are hoping to possibly go home and at least get through the holidays.  Not sure that will happen, but maybe at least, Thanksgiving.

Sierra's biopsy and update

Holy Cow, it has been over a month since we updated.
It has been a very busy 5 weeks. Some of the highlights include:
- Megan volleyball
- Lindsey volleyball
- School and work
- Sierra's drivers license (lookout)
- Stacy and I's visit to Elk Camp
- Deer hunt with all the kids.
- Sierra's Homecoming date
- Sierra's biopsy
- Gage and Lindsey appointments and updates

Friday, October 23
First Sierra's biopsy.  Sierra had her monthly biopsy in Calif.  We stayed with our good friends, the Zengers.  We had great time with them. Even went to an MLS Soccer game in San Jose. That was a first time for us.   It was also nice to see all familiar faces at the hospital from Les the parking attendant, to Heidi, Donna, Ping, and Dr Chin.  Biopsy went very quick with no complications, but her heart pressures are back up (grr). They went from around 10 last month to 14. Nothing alarming, but something to watch. A perfectly normal heart is 5-9.  They want to make a few adjustments to her meds as usual. Increase her lasix to twice a day. This will hopefully pull some fluid off to assist with the high heart pressures. Also planning for a long-term prednisone treatment.  We are NOT excited about that!  Right now she is on 5mg of prednisone twice a day.  IF she has a good biopsy result and that is a big IF, then they will go to 5mg in the am and 2.5 in the pm.  Then after that they will go to 5 once a day. Then...if she continues to have good biopsy results a few months from now.... they will leave her at 5mg once a day.   That means she will stay on the additional 5 other meds that offset the side affects AND a little puffy will hang around (no fun).  They want to do this regiment for an extended time....like years.  The reason for this adjustment is to defend against antibody reject.  Even though she does not have antibody rejection (AMR), with her history and higher heart pressures, they want to be conservative.  So now we wait for the biopsy results tomorrow.  Hopefully the higher pressures does not mean rejection.  Have to see.  Flying home Saturday and waiting for biopsy results. All in all, still doing good for only 4 months post transplant.

Heidi, and Dr Ping 

 San Jose Earthquakes beat Kansas City 1-0.  This was the same time, the Aggies were beating BSU back in Logan 56-26.  That was awesome!

 Another great Angel Flight pilot.

Sierra's good friend, Nori Zenger.

Went to the Halloween store and found a great Minion outfit.

Gage and Lindsey had checkups in Boise on Friday.  Lindsey is still doing absolutely perfect. Nothing to report there.  She will go to Calif in 3 months for a biopsy.

Gage is a different story. Over the past 2-3 weeks we have noticed a drop in his appetite and activity level, and increased tummy aches.  Stacy and I understand we are hypersensitive to this, but after going though this 3 times, we believe we have a right to.  Several weeks ago, Gage wanted to play YMCA basketball, but since then, he has lost the energy and desire, so Stacy dropped him from the team.  He has had a few 6 beat runs of V-Tach, but nothing that has made the defibrillator go off. It would have to be a 30 beat run for that to happen.

At the doctor's appointment, they decided to add a few meds to his regiment and continue to watch him closely.  His next appointment will be in late November in Calif.  Bottom line, he is doing fine, but on the road to transplant. Who knows how long.  Doctors think anywhere from 1-2 years away. Stacy and I think it will be sooner, like 6 months.  

Enough of that, other fun items to catch up with.
Sierra passed her drivers test, so look out.  She has been driving the ole' Mazda back and forth from school, dance practice, and early morning seminary.

Sierra also went to homecoming.  She went with Seth Yeck, my good friend Jeff Yeck's son.  The entire Yeck family drove up from Burley, Idaho just to support Sierra with her dance.  Very nice of them.  Anyway, Sierra, Seth and some other friends went to the dance and then to the haughted house over in La Grande. She looked great and had a fun time on her first date.

 Sierra and her date, Seth Yeck.

 Megan and Logan getting all dressed up, along with Axelrod.

 Dad and his 4 studly sons.

 Our dear mother, along with her 4 boys.  Wish Garrity was with us.

Megan is playing some awesome volleyball. She has worked hard as a freshmen and fought her way onto the varsity team.  Stacy and I love to travel to where ever she is playing.  Today, they have a big game against Helix.  Sierra and I should make it home in time for that.

Lindsey is playing junior high volleyball and then YMCA volleyball after that.  She feels good and works hard at it.  We fully believe her skills will get there.

Had our annual deer hunt.  We all look forward to that.  Took 12 kids, 5 adults and 1 deer tag.  It is mostly a deer camp rather than a deer hunt.  Roper did fill his tag with a nice buck.  Jake, Dalley Jo, and Roper worked hard to hunt into this guy.

 Down Packsaddle with Hunter

 Hunter and I at the spring in Packsaddle.  Hunter and Keanna are the first kids to make it here.  TOUGH hike. I was very proud of them.

 Hangin' out at Deer camp

 See Justin and Keanna?

Jake explaining how they hunted into Roper's buck.  Great story.

The crew

Last of all, Stacy and I rode horses into elk camp.  It was tons of fun to get out with Jon, Blake and Dana. After we left on Saturday afternoon, Blake's horse, Mister,  ran off with his hobbles on.  It took them 2 days to find this horse.  Many of us thought Paige's precious horse was a wolf bait, especially with hobbles on in very thick timber and rocks, but Jon found him in the rock ledges Monday afternoon. What a guy.

I think that catches us up with our family.  Stacy and I are doing good.  These heart issues are still hard on us.  Especially when there doesn't seem to be an end is sight.  We count our blessings, don't take our time in Oregon for granted, keep the faith, and love to support our kids in whatever activities they are involved in.

I will let you know the biopsy results when we get them.
Till next time,
Jason

Sunday night, October 18
Heard from Calif.  Big ole FAT ZERO!!  Put that in your book!  So we drop the prednisone to 5 and 2.5 and head back in a month.

Megan's volleyball team won against Helix in an exciting game. Final match was 33-31. Megan played a little, and had one good block.

Just to put a pimple on the pumpkin, Gage's tummy hurts tonight and wouldn't go out to play with Range and Brand.

To quote Stacy's 21 Day Fix workout video, "It's a journey, not a destination".