3.18.2014

One Step Forward And You Know The Rest

Yesterday was hard.

I was told time and time again that day 3 is often the hardest, so maybe it was normal but to us it was as far from normal as possible.  Gabe was sad and mad and there was absolutely nothing we could do about it.

How about another picture of Gabe laying in bed?

He had to get a new IV and start a new respiratory therapy where they basically beat him gently on the back with a contraption that looks like an air hockey puck.  I'm sure that's the official medical description.  Both of these made him extra grumpy.  


He had another special visitor, but he just wasn't up for playing.  Livi was so awesome at trying to encourage him.  Can't wait to watch them harass each other again.


Andrew went to work today so he headed home to get some sleep around 7 last night.

I'll be totally honest, I was scared when he left.

Gabe isn't happy with either of us, but he is mostly mad at me.  He didn't want me anywhere near him, wouldn't look in my direction.  I had no clue how I was going to keep his spirits up when he didn't want me in the room.  My heart broke every time he shied away from my touch.  I know that it is just how he's dealing with this and that I'm the safest person for him to get mad at, the logical choice, but it wasn't easy to accept.  I cried a lot yesterday, longing for him to tell me I was his best friend again.

When Andrew left, I planned to let Gabe watch a cartoon and fall asleep.

But he wasn't tired at all.  So I sat next to him in the bed, the closest he'd let me get all day.  I rubbed his hear and felt his little body soften towards mine.  It wasn't much, but it was what I needed to get my Mama Confidence back.

Of course he still loves me.  

I will let him be mad at me.  I will take that on and put it where it goes.  If it helps him cope, I can deal with it.

With a little coaxing, I got him to eat a little pizza and a roll.  Then he decided to eat some strawberries and grapes.  More food than he'd had in days.

And because I just couldn't stand to go an entire 24 hours without seeing his smile, I called the one person in the world that I knew could drag one out of him.


His eyes got heavy and I rubbed his head until they closed.  With every second I watched him sleeping,  my resolve to see him through this insanely difficult time grew.  I woke up today exhausted but ready for the day.

And Gabe rewarded me with little glimpses of him.


We had a nice quiet morning, just the two of us.  After his daily labs and chest x-ray, we went for a long walk and he chatted me up.  More words than he's said to me in days.  I was so, so happy.

About 30 minutes into our walk I noticed him starting to sink in the wagon.  

Then he started to look, well, queazy.  Mother's intuition was spot on since 10 seconds after I noticed, he puked all over the gift shop floor.  We cleaned up as best as we could and headed back up to the room to rest.

Right as we got back to the room, the nurse came in to update me on his labs and X-ray.

Now, I have to preface this by saying that due to Gabe's extreme mood change, I was feeling very confident that we were on the homestretch, over the big hurdles.  So when the nurse calmly told me that  the left side of his chest still had substantial fluid on it, I was pretty upset.  The rest of what she told me wasn't any more pleasant.

So here's what is going on.

It's very normal for the Fontan to produce fluid in the chest cavity.  That is why he has the tubes coming out of his chest, to drain the fluid.  The goal is for them to dry up.  Then we can pull the tubes and go home after a 24 hour observation.  Since yesterday morning, the left tube hasn't been draining which we assumed was due to that side being done.

But his chest X-ray showed that there is still quite a bit of fluid there, it's just not in the spot where the tube is draining.  So they decided to pull that tube.  It is most likely that tomorrow it will be put back in up higher on his chest so it can drain that fluid.


They put him on a couple diuretics yesterday to try to help get the fluid off.

Trouble with that is they did their job, but not in the way we needed.  He has peed a lot, but since he isn't eating or drinking much, his sodium and electrolyte levels are now very, very low.  We stopped all diuretics and are trying to get him to drink Powerade and salt water.  It's going about how you'd expect.

They did give the go ahead to let him eat any and all salty food.  Nana came to the rescue with some Chickfila and this child who hasn't eaten since Wednesday downed the entire thing.  I guess we were just offering him the wrong foods.  Needless to say, Andrew is super happy to know Chickfila will be on the menu for breakfast, lunch, and dinner until the sodium is back up.

There was talk about a blood transfusion, but the surgeon has decided to hold off on that.  We are going to watch him in hopes that his heart can correct his low blood levels on it's own.

The biggest issue we are facing right now is that, since we stopped the diuretic and took out the left chest tube, he is going to continue to accumulate fluid on the left side.  They warned us that he will likely need to go back on oxygen.

Tomorrow morning's chest X-ray will determine if he will have that chest tube put back in.  If he does, we know we have at least a few more days here.

When they first told me, I was pretty upset.

I'm not sure where I got this idea, but I was convinced we'd be home by Thursday.  I know that here is the best place to be and that they are taking excellent care of him.  I don't even mind being here.  We've been comfortable and are even sleeping well.  I'm fine now, but was sad at first.

He is doing so extremely well emotionally today.  

It's a stark contrast to yesterday.  Even if we end up being here for longer than I was hoping, if he's doing OK, we will be fine.  I know there will be ups and downs, but today was more up then down and that makes me very, very happy.

He has a few procedures and treatments that need to get done today, but other than that we are just resting.  We have Nana and Papa Curt here and Kelsey just came to hang out for awhile too.  Andrew will be back after work.

I'm just glad to be seeing little peeks of him again.

4 comments:

Anonymous said...

Your sweet boy is so brave and such a trooper.....pretty sure he gets that from his mama!! :-) Hang in there. Prayers for more steps in the right direction. Melissa

Butterfly Wishes Wonderland Dreams said...

Aww so sad to hear about the steps back. Hang in there it will get better and this will all be a distant memory. I'm going to mass tomorrow and will light a candle for you guys. Also having my kids school pray for him. According to my 2nd grader "God will hear all those praying kids tomorrow and heal Gabe fast!" Hugs!!

Anonymous said...

Most adults couldn't handle what this boy has gone through. Know that abundant prayers are being lifted up for him. I truly, truly admire you and Andrew for being so incredibly strong through all of this. Gave. You fought so hard for him I remember, and the fighting continues. Thank God he has a mother and father like y'all to help him through this. God bless you all.
Alicia P.

Anonymous said...

Talking to his big sister should be a daily if not hourly option! HA..
He is being such a brave boy. He may not realize now how important all this is but one day he will be so thankful.
Praying for all of you