Thursday, April 20, 2017

Good news, bad news. Day 15

So do you want the good news or bad news??

Good news first.  He got another big fat ZERO, no rejection!  And the echo showed good / normal heart function.  That again is huge.  They were concerned that the fluid around his lungs / heart was caused by acute heart rejection, but that is NOT the case.  This means they still don't need to go up on the steroids. We will take all that.  Kidneys are doing well, and his other functions are doing good.

Now for the bad news.  He, by far, had the worse night since transplant!  The pigtail chest tube in his side is very painful and makes him nauseous. They have given him 3 doses of morphine, around the clock Tylenol, other pain meds, and 2 hot packs over the chest tube site.  He was up at least 5 times last night howling in pain.  Stacy stayed here and tried to comfort him the best she could. Just a very long miserable night, coupled with the fear of acute heart rejection.

This morning he is doing better.  He is sitting up, eating a little (like 2 bites) and taking his meds. The goals for today are; to get/keep the pain under control (please), get him up and walk, 12 hour IVIG infusion (antibody treatment), an x-ray to check for more fluid, and beat his Dad at Mario Cart Wii.

It goes back to the 'Highs and Lows' we used to talk about.  Don't let the highs get to high and definitely don't let the lows get to low.   Today will be better.  We all know that.  If nothing else but the ZERO, it will still be a good day.   Sure glad I made the decision to get here from Oregon as soon as I did.   I just felt like I needed to get here as soon as tax season was over.  As bad as last night was, it would have been so much worse if Stacy was trying to manage Gage in the hospital and the rest of the kids at the RMH.  Who knows, but I just might have been the right help at the right time.

In other news, they told us he can go back to Nixon Elementary once he is discharged.  This will make him the first transplant kid to go to a 'regular' school right after transplant.  Gage is really exited for that.  All other kids go to the hospital school.  Stacy will still be his nurse, and he will be wearing a mask, but there will be NO backpack.  His teacher, Mrs B, and the rest of his class will be so excited to see him.  Speaking of his class, so far his teacher, and eight of his classmates have come to see him.  He sure has a lot of good friends there.

This was also one of the reasons I haven't cut my hair yet.  I want Gage feeling good and staying good. We will cut it when he and myself are ready.  (The rest of the crew were ready weeks ago).

Here's to a good day, ZERO celebration, low/no pain, much needed rest, an IV treatment, and a few walks.

Till next time,
Jason




Evening prayers, with Megan on speaker phone. 
Hospital school here to play a few games, all good as long as Mom keeps the hot pack in place.

18 comments:

Anonymous said...

Good news is wonderful, hopefully it's ALL much better by tonight. Sending prayers. -Kay P.

Anonymous said...

Continued prayers for all of you!

Anonymous said...

Thank goodness it's not rejection! I have been so worried about Gage since I read your post last night. Hopefully his pain will clear up today and he'll start feeling better again.

Bonnie Bingham said...

Oh.... Jason and Stacy... soooo thankful for a Zero.. you two are amazing.. your in my PRAYERS ALWAYS๐Ÿ™๐Ÿผ๐Ÿ™๐Ÿผ๐Ÿ™๐Ÿผ๐Ÿ™๐Ÿผ

The Martins said...

So grateful for no rejection. Prayers for everything else to get ironed out quick. Much love and prayers for you. ๐Ÿ’•

Anonymous said...

Zero - YAY! No rejection - YAY! Will continue to pray that everything else goes away and Gage can return to his school, his friends and a "normal" (whatever that is) life.

Anonymous said...

Praying for your family. ❤️

NOTOrious said...

Chest tubes are very painful. Poor guy. Maybe morphine doesn't work as well for him as something else, like Dilaudid? Just a thought. Your family is in my prayers. I just recently heard of you all. Incredible! (I am a Wallowa County native and live in Boise.)

Anonymous said...

Gage looks a little tentative...but Mom looks determined! AND, theres nothing like Moms arms around you to help you sleep better! Gonna get thru this rough patch and be WAY better on the other side! Prayers continue from High Valley via Elko!

Unknown said...

You two have got to be the most patient parents who ever existed to go through this time and time again, still be together and not jaded. Maybe you'll need ptsd counseling later but God has sure blessed your family through all of this!

Unknown said...

Praying for pain relief and some rest for all. Sending my love you guys! ❤️ Kristina and Taylin

k said...

Thank goodness for another zero! What a relief! I'm sure its an incredible relief too to have you there with the family. We are rooting and praying for you guys!

cici said...

A ZERO HAS NEVER LOOKED SO GOOD! :)
Have you guys tried the mini appraoch to his food. A small plate of a few bites of different foods with juicy Grapes He will be proud when he finishes the plate, unlike seeing that big pile of eggs staring him in the face. you can add a little more every day until his appetite kicks in.
A little piece of toast with peanut butter and put a face on with raisins or something he likes.Never fails and makes it fun.
Big hug for this guy!

Karen W said...

Zero and no rejection so great. Hoping for better pain control and a better night...for Gage and Mom.

Anonymous said...

Grateful for zero! Has he talked any more about death? Perhaps fear is still lurking and not allowing him to relax. You're there with him and know much more than any of his supporters.

Amy Kapuanani said...

Big big (gentle) hugs to you all. Happy for the zero! Prayers for pain to be managed and for rest for Gage and you two amazing parents.

Bina said...

So touching to see Nurse Stacy taking such good care of this sweet patient! Praying for a better night & day! ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ๐ŸŒบ

The Reading Nook said...

Wonderful that he has a Zero! I'm sorry that he's having so much pain with the chest tube. I'm so glad he has so much support! I hope the pain will be managed and will get better!*hugs*