Nov 13, Back to the ICU.

Been a rough day so far.  He hasn't eaten much and has been very uncomfortable all day.  The best part of the day was between 2-4 when Megan and him were playing Wii Mario Bro in the play room.  But other than that, he has been pretty miserable.  He struggles with breathing, and his feet and hands are cool. His tummy pain has been between 4-8, this is all with the increased IV milrinone. They have done blood draws which is showing increased heart failure.

So tonight they are going to keep him on oxygen, increase the IV milrinone to .75, increase his IV lasix, and hold his feeds.  All of this to see this will ease the strain on his weak heart.

They will watch him pretty close for the next 12 hours.  If he doesn't perk up, act better, and have better stats, they will move closer to the HeartMate.  Dr Rosenthal and a nurse practitioner had a good long visit with us about the HeartMate and how it has replaced the Berlin on kids his size.  Time will tell.  Below are some pictures of the devise.

Lets not forget that Sierra had a biopsy today.  It went very well.  Her heart pressures are down slightly from last month.  That's good.  We will find out the rejection results tomorrow.  If she gets another zero, they will drop her predisone from 7.5 to 5.

So now we see how the night goes.
This would be a night we specifically ask for prayer for our small 40 pound 7 year old sick son.

I visit on 3 West from Lindsey's favorite Riza shortly before being transfered back to the CVICU. It was sad to see Gage so miserable

 The bright spot of the day, when Gage was beating Megan and Mario Bro.  There was a lot of excitement there.

Leaving Room 3241

Meanwhile, Sierra and Rosalee heading in for biopsy

 Couple good pictures of the HeartWare and where it is placed on the heart.

The HeartWare is like an irrigation motor, a very expensive and small irrigation motor.  Unlike the Berlin, it does not pulse, to continuously spins.  More on this as the store unfolds.  ACI this is for you.

Nov 12, Back to Room 3241

Jason here and checking in.
It has been a good 24 hours.  They have gone up on his IV milrinone to .5.  At this level he now qualifies for status 1A on the transplant list. As long as he stays at that level on the IV, he will remain a status 1A.  Since yesterday he as responded well to the IV, he has eaten more, has not complained of any tummy aches, and has gone on several good walks.
At about 1:00 today, he was transferred up here to 3 West room 3241.  Yes, the same 3241 we were in for over 8 months with Lindsey.  So many memories in this room. A crazy sense of being at home.  Crazy, I know.  Anyway, the hope is we will not be here long.  If he does well on this level of milrinone, he could be discharged to the RMH on the IV.  If he does NOT do well they will pursue the Heart Ware devise.  It's kinda like the Berlin, but smaller, internal, and he could go to the RMH on it.  More on that as we know more.  
Anyway, Sierra, Megan and I drove down yesterday and plan to fly back on Saturday.  Sierra had diabetes clinic and biopsy tomorrow (Friday).  Of course we are hoping for a zero, and good heart pressures.  If we have good results they will decrease the predisone a bit more.  We will just have to see.
Hunter and Lindsey are home with my parents. They would love to be here with us, especially since we were moved into Lindsey's old room.
Tonight, Megan played basketball with some of her old friends.  It was a fun night for her.
Looking long term, Stacy and I are looking at options.  Do we relocate the entire family here to the RMH and enroll in school?  If so when?  Or do we have the teenagers stay home and I travel back and forth?  Right now we are just looking at all the options.  The best time to move the kids here would be over Christmas break, so we have some time to see how Gage is going to do.
I wont lie, this had been a hard thing to accept.  It has been tough and emotional on our family as we watched Gage get sicker and weaker over the last several weeks.  Many times we just wanted to deny anything was wrong, and wanted to continue on with our normal lives in Oregon.  Now we have to accept it and prepare for the worse and hope for the best.  Fortunately (or unfortunately) we have done this before, and know what to expect.  That is good but also a little discouraging to know the tough days ahead.  But ya know,  we got this.

Met a few families going through some rough times.  Every one here has a heart breaking story.  Some of these families don't have the options like we do.  Life just isn't fair sometimes.

The scouts and other back home cut, split and stacked our firewood.  Very nice of those boys.

Thank you to all the thoughtful comments, prayers, concern, and support.  We are in this for the long haul and are grateful for all the prayers and support.  Thank you.
Till next time,
Jason
  

 On our way to 3West

    

Officially Listed Today

Gage was too tired and sick to go to school Monday.  He was still vomiting, pale and very tired.  Tuesday I was packing up to drive to California the next day, but was putting off the inevitable.  Calling California to update them on Gage's status.  I knew if I called, they wouldn't let us drive there and that was going to change all our plans.  However, I was worried at his continual, quickening decline I knew I had to call them.  So, I called them and they wanted him taken to our ER to make sure he was stable enough for the 12-13 hour drive to California.  They were very concerned and wanted him life flighted that night.  Last night Gage and I were life flighted here to LPCH.  They started him on Milranone around 1:30 AM.  So far he as tolerated it well.  He is eating better and hasn't complained of stomach aches.  If he continues to do well, there is a chance he can be released from the hospital to the RMH on milranone.  Today he had a picc line placed to prepare for long term milranone.  Lucky for them they sedated him, otherwise, it would have been him screaming until he eventually passed out.  He is not a lover of needles at this point.  He has been in bed all day watching movies.  But, we hope to go on a walk tonight.  It is always hard to tell how he is "really" doing when he hasn't eaten for over half the day and he hasn't moved.  I am sure we will see over the next couple of days.

Jason is driving here with Sierra and Megan today.  Sierra has biopsy Friday and diabetic clinic tomorrow.  It will be nice having Jason here, as I was trying to figure out how to be with Gage in the hospital and Sierra at her appointments at the same time.  Megan came along to go to a Palo Alto High School basketball practice.  The coach was her coach in 6th grade when she was here.  He called and said that they have a spot for her if she wants to come play for them.  He has been absolutely amazing!!

Gage was officially listed today as a status 1B.  A little higher on the list than we thought.  His Milranone dose right now is 0.25 if they put it up to 0.5, his status will change to a 1A.  This milranone is kind of a last step before looking at a mechanical support device.  I talked with a doctor today, who said that milranone is great, but it can also be hard on the heart.  I don't think we are to far off from mechanical support.  Time will tell.  Thank you to everyone for all your offers of help and support.  We are truly so blessed to be surrounded by such amazing people in both places.  You help make our burdens light.

Quick Update - November 8th

Gage and I were released to come home this weekend.  We left as soon as clinic was over and hit the road not looking back.  We made it to Redmond and was able to watch Megan play in the state volleyball tournament.  Sadly, they lost to the 2 teams they played.  However, they left with a great experience and good memories.  It was so great to be there and watch her. With the added bonus of us all together as a family.  Megan played well for being a Freshmen on a varsity team.  I am very proud of her.

I wish I could say that Gage is getting better, but he does not seem to be heading that direction.  He is starting to get stomach aches again that last most of the day.  He is vomiting most mornings (mostly dry heaving, as there is nothing in his stomach) and eats hardly anything.  In the afternoons he will feel a "little" better and eat a "little" bit.  But, definitely not enough to sustain him.  I went up to 50 mL/hour on his feeds (which is less than 1/4 of a cup/hr).  He holds the feeds down, but complains of stomach aches with the vomiting.  So, I am attempting to turn the feeds down tonight to see if that makes any difference.  Bottom line, we are headed to California Wednesday, I am certain we will not be coming home this time.  If he can't tolerate that small of feeds, his heart failure is worsening and the next step is milranone.  This is the IV medication that both Sierra and Lindsey were put on when they were first diagnosed.  It would help for a little while, but not for very long.  IF Gage goes on this medication, it would put him at a status 1A on the transplant list, instead of a 2.  This would move him up on the list.

The doctors met Friday and felt "unanimously" that Gage should be listed at a status 2 and we could wait at home.  That of course, was before we have let them know Gage's decline over the weekend.  The good news that came out of the meeting is, our surgeon (Dr. Meada) felt confident that he could fit a heart ware device in Gage.  This is a device like the Berlin.  It assists the heart in pumping, however, the kids that get it can be out of the hospital and live at the RMH.  This is huge.  IF we move our family down there, we won't have to live at 2 places, the RMH and the hospital.  Gage can go to games and outings with us and not stuck in the hospital like Lindsey was.  So, there is the upside to our new adventure that we are embarking on.  We will take that.  For now, Sierra, Gage and I will head to California on Wednesday.  Sierra has biopsy and diabetes appointment and Gage will have clinic.  Then Sierra will probably return on Saturday and Gage and I will stay there for the long haul.

Megan's biggest fan Johnny Boy sporting her number.

The kids saved Gage his pumpkin to carve.  So, tonight he and Sierra carved his pumpkin.  It's the brightest lit of the 3 pictured above. Hunter carved a big one that was out of our garden,

Gage is OUT of the Hospital

Gage was released from the hospital yesterday.  We are staying at the RMH, and are very grateful for that wonderful place.   Sometimes it's just nice having a private room and shower to relax in.  While Gage has been in the hospital, I have slept on the parent bed on his side of the room.  We shared a room this time.  Sometimes, having kids with transplants has its benefits, as they always get a private room because their immunosuppressed.  With sharing a room, I would go to the community parent shower in the mornings and do laundry in the washer and dryers on the 3rd floor.  All great accommodations for parents, don't get me wrong.  It all worked out great for Gage and I.  He had a great roommate.  Just saying, sometimes it's just nice to relax in your own room with your own shower!

I wish I could say Gage is doing amazingly better, but that would not be the truth.  He is acting good.  He wanted to stay in the hospital until next Tuesday (a random day) because he was able to watch 7 movies while he was in the hospital.  He thought that was pretty awesome.  He is still feeling cold and not eating much.  The tube feeds are nice, in that you know he is getting some nutrition.  It offers a little more peace of mind. The present plan is, he has clinic tomorrow at 10:30 AM.  IF all goes well at the appointment, he and I will hit the road.  I may accidentally put my phone on airplane mode while driving, just saying.  We will drive to Redmond, OR where we will get to watch Megan play in the state volleyball tournament.  Jason and the rest of the crew will meet us there. The following week, Sierra, Gage and I will return to California the 11th-14th.  Sierra will have biopsy and diabetic clinic and Gage will have clinic.  Then we will ALL return home.  That is MY plans at least, lets hope it stays that way.

Gage Update - November 2

Gage has been acting great.  More like himself.  His circulation has improved, his hands and feet are actually warmer.  His eating is about as good as it is going to get, but he is tolerating the extra feedings well.  He still has an appetite during the day even with the feedings at night, which is exactly what they are wanting.  The present plan is, to release him tomorrow to the RMH.  Stay there a couple nights, then go to clinic on Thursday.  If all looks well, we will be able to hit the road on Thursday after clinic and head home.  Not sure how long it will last, but it would be great if we could get through Thanksgiving.  He will have to deal with having a feeding tube in his nose while at school, but a trade off we are willing to make to be able to go home.

On Friday, they have their "transplant" meeting.  This is where they discuss different patient cases and present his case to decide whether it is time to list him or not.  They will call us after the meeting and let us know what they decided.  I am almost certain that they will list him as a status 2 and allow us to wait at home for now.

Megan's volleyball team made state playoffs.  So excited and proud of them.  Gage and I are planning on making it to Redmond this weekend to be able to watch them win  State!!