Sunday morning

Saturday was a great day. He had Susanna as his nurse, she was one of the favorites from the Lindsey days.  He had a chest x-ray and a checkup, and then was released around noon.  We wanted to do something fun, but easygoing.  So we decided to drive to Watsonville to pick / eat strawberries.  It was fun getaway.  Gage seemed to really enjoy it.  Sierra drove the entire time.  She is getting there on her driving.  There were only a few times I had to grab the 'Oh Crap' handle and pump the imaginary brake, but as Sierra said, "Ya, I know Dad, but we are still fine"

Good to all be sleeping at the RMH, especially with Gage nestled between Stacy and I (grrrrr). Sierra enjoyed the other queen size bed ALL to her self. Good thing I love my kids.

Church today and count our many blessings! Pack up tonight. Sierra's biopsy Monday at 8 am and Gage's clinic at 9:30, then hopefully....

 Watsonville strawberry patch

 Hopefully it will be many moons before we return to this room.

 Nurses Susanne and Danise from the Lindsey days

  

Finally Friday

Watching this chest tube drain can drive you insane.  And yes, we have been watching it! It really doesn't matter how good he looks and acts, or how much our other 3 kids and life is waiting for us back in Oregon, or that school starts soon and the kids are not ready, or that the beans in our garden are ready to pick, or the work I have piling up at the office, we can't leave until the tube is out!  This has been a good exercise in the need for patience.  Sometimes I have to just step back, take a deep breath, and be patient.

Having said all this, Stacy and I really have been watching the tube...and... Lo and behold... he made it. At 4:00 pm, the chest tube put out only 60 ml over the last 24 hours, which is the minimum it needed to be.  That means it can come OUT!   We asked the nurse about it, and she confirmed it.  At first they said they will wait until morning to pull the tube just to be sure, but they could feel a little (okay maybe a lot) of resistance from Gage's parents.

So now, after some Adivan, and and a good nurse practitioner, Gage has been freed from his leash. The chest tube is out, 1 week after the surgery.  He was pretty scared as they pulled the 14 inch chest tube out and sewed up his new belly button.  

Before discharging from the hospital, they will do an x-ray tonight and an echo / x-ray in the morning to look for air pockets and fluid.  So, pending something major, he should be out of here tomorrow morning.

Now it is back to Sierra.  She still has a biopsy on Monday morning, after that we are heading for Donner Pass and home sweet home.

 Getting ready to pull it out

That is it

He is still feeling a bit dizzy from the Adivan

It's out of here!!

A celebration selfie

Thursday, Day 6

Six days post surgery and he is improving everyday.  He feels better, no pain, eating morer, goes to school, getting his goofy personality on, BUT the chest tube is still draining.  The rule is it can only drain 60 mls in a 24 hour period.  Right now he draining about 100 mls.

I was able to get some computer/office work done, Sierra went to school and hung out with Nori, and Stacy spent some time at the RMH being a mother.

Had some good friends from the 'Lindsey' days come by for a visit.  It was very nice of them to come by, visit and bring some food.

Basically we are all doing fine, just really missing our kids back home.

Gage and his friends showing off the Lego airplane

 Stacy and Gage working on a Lego plane

Time for a dressing change

Brings back all kinds of good memories

And now for Wednesday

Gage had a great day, no joke. Has had no pain all day, eating well,  taken his medicine, no vomiting, good attitude, long walks, and went to school and play room. The ONLY issue is that !@#$ chest tube.  It is still draining to much for them to take it out.  No saying how long this could go on. Days? Weeks? More?  As long as the chest tube drain, he can't leave.  They are adding some diuretics to see if they can get him to pee off some of this fluid.  He is definitely a peein', but the tube keep a drainin'.

Sierra had an echo and clinic appointment today.  She is still doing well.  They have rescheduled her biopsy for this Monday.  We are hoping Gage is out by then, so we can all leave for Oregon after Sierra's biopsy.  If he is not out by then, we may rethink our plans.  Maybe Sierra and I will head home to prepare for school and Stacy and Gage will stay here.  This is NOT our first option, we would all rather go home together.

My mother is doing a great job with our kids back home.  They had orthodontist appointments, volleyball practice, horse riding, house cleaning, and other general 'Grandma' activities. Thanks Mom!  We couldn't do this without you.  Wish we could be home to help where needed.

Good to see Tracy, Shannon, Maryalice, and other friends from the Lindsey days.

As they say in Finding Nemo, "Just keep swimming..."

 

 Magic show on the 3rd floor.  Gage got to help with the tricks.  It was a fun show for the hospital kids.

 The trick Gage helped with was the one where he writes his name on a $5 bill, and somehow it ends up in the middle of a lemon.  I have seen this before and still not sure how he pulled it off.

Good friend and Nurse Practitioner from the beginning, Jen Schek

Take a good look at this.  This is a demo of the new Heart Ware.  This is what is replacing the Berlin Heart.  The pump, sitting on the red bag, is attached directly to the heart inside the body, with the black wire coming out of the skin to the external motor and battery pack which is carried in a bag.  We wanted to see this to prepare ourselves for what my be our new partner in this journey.

 Our new friends, the Quinns, brought Gage a couple of jars of Wisconsin dill pickles.  He is excited for that.  Thank you.

 The $5 trick??

And Sierra getting set up for her trick

Tuesday update

May sound obvious, but we finally accepted the fact that we are not going home until Gage is ready.  He is improving, but at his own rate.  Here is where he is at..
 - His chest tube is still draining, over 110 ml today  (needs to be 60 or less be get it removed). So that means at least one more day (if not 2 or 3 or more).
 - Went on good walks.
 - He felt good enough to and wanted to go to school.  That is a huge improvement.  He was there for 2 hours and seemed to enjoy himself.
 - Ate dill pickles for both lunch and dinner, plus a few bits of spaghetti, and a little juice.
 - Felt good enough to go to the play room to play x-box ninja turtles and car racing.  He even showed a little emotion, which was a pleasant surprise.

Kevin Murphy was here for a clinic visit.  He and his mother took Sierra to Santa Cruz yesterday, very nice. Anyway, he was telling Gage about how he hurt his foot winning a stuffed snake for Gage.  Gage thought that was pretty cool.  Sierra thinks he is pretty cool too...

Unfortunately, Gage did throw up a couple of times today, and still feels pretty crummy.  So all-in-all, we are staying a bit longer. Sorry Hunter, Megan and Lindsey.   We will be home as soon as we can.

Sierra really wants to go home tomorrow, so if she sticks to her plan she will be shaving her legs extra smooth, putting on her high heals, packing up her meds, and hitchhiking her way back to Oregon with some nice trucker.  Interesting to see how that plays out??

later

 Gage and Sierra heading to their first day of SCHOOL!  Kevin just finished telling his story of the stuffed snake and how he hurt his foot winning it. 

 Gage beating Mom at Ninja Turtles

Monday report

Gage ended the day a little better than the day before, but it took all day to get there.  His chest tube is still in.  The drainage from the tube has to be less that 60 ml over a 24 hour period, he is still over 100 ml's, so the chest tube stays in.  The tube seems to be the source of the pain, discomfort, nausea / vomiting, lack of appetite, continued stay in the hospital, and feeling absolutely crummy.  The idea is when they drop the chest tube, he will perk up enough to get us out of here.  Still watching him close for heart failure.  Took a few walks, visited the hospital school, played around in the Sobrato room, walked briefly outside in the court yard, and comforted him the best we could.

Stacy and I have been tag teaming staying with Gage as he slowly improves. Hopefully he has a good night.  Good to have many of our awesome nurses from 3 West.  Staying here sure reminds us of the good ole days back in 2012 and 2013.  It's crazy, but I have enjoyed the time I have been able to spend with my wife.  She is such a good mother.

Thank you Diana and Kevin Murphy.  They took Sierra with them to Santa Cruz for the day.  Sierra had a great day, she would have gone nuts wondering the halls of LPCH.  She is VERY excited to go home.  She keeps saying if Gage is not released, she will drive, fly, or even hitchhike to Oregon, but she is going...no matter what!!!!

Just talked to Stacy, they had to give him some oxycodone. He was screaming out in pain and they just ran out of options. He is sleeping now, hopefully it stays that way for the night.

Here is to a good night.

Better day, but don't ask Gage

Sunday was a better day for Gage, but don't ask him.  We were able to get him on 4 walks kickin' and screaming, mostly screaming. We used a fun little buggy car to get him out, but mostly it was just pull him off the bed and start the walk.  Sierra and I went to church while Stacy stayed with him. Chest tube is still in and draining, grrr.  It's just draining to much to be removed.  For now they are sticking with the chest tube and major surgery as the cause of the pain and discomfort, NOT heart failure.  But they are still watching him close.  His belly pain and nauseous has backed way off since they stopped some of the major pain killers.  So, for now, they are only using Tylenol and ibprophin for pain.

He has eaten a little bit, a very little bit, like 4-5 bits all day, but that is 4-5 bites more than the last 2 days.

Having said all this, he is still VERY miserable.  We still haven't seen the Gage personality we all know and love.

All in all, he is doing better, but don't ask him.

Rough day

Gage had a rough day, as did his parents. Doctors never could get control of his pain, honestly he was miserable all day. He has been vomiting, eating nothing, at times needed some oxygen, and puffy in the face and belly.  He took a couple of very small walks, like 10-15 feet, but that was it. Only time he smiled was for the camera.   Hopefully they can take the chest tube out today.   They did take out a few IV, and moved him up to 3 West.

Doctors are throwing around a couple of ideas, 

1)  Maybe the heavy pain killers is making him nauseous and vomiting, so they held the heavy pain meds last night to see if that helps with he belly.  This is what they are hoping is the problem.

2)  Chest tube.  The chest tube is always a huge discomfort to kids.  Hopefully they can get that out today!  That will definitely help. 

3)  Heart failure. This is the one Stacy and I fear the most. With the already weakening heart, advancing cardiomyopathy, and the stress of the surgery his heart is struggling to recover.  If we all remember, signs of heart failure that both Sierra and Lindsey had were vomiting, belly pain, no appetite, need for oxygen, swollen face and belly, no energy, weakening kidney's etc etc etc.  Stuff we are way to familiar with.  Then to hear the monitors go off, nurses looking concerned then going out into the hall to talk softly with doctors.Hopefully it just takes Gage a bit longer to recover, but still recover.

Remember, this surgery did NOT help his heart in anyway.  It was done ONLY to rescue him in the event of and life threatening V-tach.  He still has the same ole advancing heart problems 

There were several times yesterday I needed to go for a walk and make a few phone calls to get my mind of the stress.  Stacy stayed with Gage last night, haven't heard how the night went.  Sierra and I came back here to the RMH.  

So glad Sierra went with the church youth group to go white water rafting.  She was gone all day and had a blast.  Thanks for including her.

Sorry for the 'doom and gloom', but this Dad keeping it real. We will pull through this, we always have, and we will this time. Keep the faith, keep the prayer, hug your kids, be grateful.

We have been watching the fires in Eastern Oregon, unbelievable!  Feel so bad for farmers and ranchers who are loosing livestock and property. Thoughts and prayers.

Again, the pictures tell the story of the day....