5.05.2014

Popped Bubbles

Gabe is doing awesome.

I wasn't sure he'd be able to turn Friday's nasty attitude around, but he woke up Saturday morning a new man.  He's been happy and funny and full of spunk, making all the staff giggle every time he opens his mouth.  His appetite came back with a vengeance Saturday night and he's been full of energy.

When Andrew came to visit that night, he rigged up Gabe's chest tube box to the little wheelchair we borrowed and there was no stopping the kid.

watch your ankles, speedy gonzales coming through

He was still putting out fluid, but on Sunday the output dropped significantly.

We started to see the light at the end of the tunnel.  Gabe felt good, Josie was off having fun with the Mabrey's, and we were able to somewhat enjoy the day.  Andrew was planning to come up to visit, but I was so sure we were about to go home that I told him to stay home.

Every nurse we flew past on our multiple trips around the hospital could not believe how active he was with the chest tube.  His somewhat extreme volume level was excused with smiles, "it's not everyday we get to see kids feeling so great around here!"

hey, if he won't sit in it, I will!  I'm so tired!

I was so sure, so, so sure, we'd be getting the tube out today.

I woke up feeling good.  Our last day in the hospital.  Gabe had virtually zero output overnight.  We went down to X-ray early and waited for the doctors to come for rounds.  

We rigged up his bike and went on long rides since it was obviously his last day getting free range here.  I packed up our things, loaded up the wagon.




Rounds took extra long.

We are at the end of the cardiac unit which makes us the very last stop.  

My palms always get super sweaty when I see them standing in the hall.  They have such power over my life.  My day hinges on what they decide.  This time I was confident.  Every nurse, even his surgeon's assistant, had told us it was time for the tube to come out.


I'm sure you know where this is headed.

As soon as they walked in and pulled up his X-ray, I knew we weren't going anywhere.

Today's X-ray showed more fluid than yesterday's.  Not good.  We get a different doctor everyday at rounds so I had to sit and listen to them go over all the stats and med changes from the last 5 days.  I kept thinking they had to have something wrong.  He feels fines.  He's acting fine.  There's no sign of fluid anymore.

I held it together for most of the meeting, but eventually I just had to cry.  I was so disappointed.

Of course I don't want them to send us home until the fluid is gone.  I don't want to end up back here again and I saw the fluid on the X-ray with my own eyes.  I know leaving the tube in and staying a couple more days is what he needs.  But that doesn't make it even a tiny bit easier to accept. 


I want to take him home.  

I want him to enjoy this nice weather and go on the field trip we had planned.  I want to spend our last few weeks with all of us in Georgia together.  I'm sick of all night wake ups and watching them struggle to find veins to take blood each day.  The thought of eating one more meal from the cafeteria makes my want to puke.

Basically, I'm feeling extra sorry for myself.

I'd say for Gabe, but he doesn't seem to be phased by being here.

Which is a huge silver lining.  He's enjoying causing a ruckus in the halls and eating pizza for every meal.  The chest tube, which I'm told is one of the most uncomfortable feelings in the universe, doesn't seem to bother him other than slowing down the speed he races down the handicapped ramps.  He loves when the guitar guy comes to sing with him and, for Heaven's sake, he's getting to go to a petting zoo with Fancy Nancy officiating this afternoon.

After having a nervous breakdown (for real y'all, it was ugly) on the phone with Andrew, he made the call that we are switching places for the night.  I also know that this is a smart move, especially since we have no idea how long it will take to get this fluid off, but it's not an easy move.  There's no way I could verbalize that I need a break, so I'm thankful that he knows me well enough that I don't have to say it.  

I haven't seen Josie since Thursday.  I know she had the greatest time with Amber and Olivia at the lake, but I miss her.  A lot.  Thursday was a rough day for me and I wasn't very nice to her.  In fact, an hour before we made the call to take Gabe to the cardiologist, I'd sent her up to Amber's to play so I could regroup and fix my attitude.  Then all this happened and I hate that that was our last interaction.  I need to see her and spend some time with her tonight.

I'm hopeful that the fluid will miraculously be gone by morning.

That 36 hours from now, we will all be home.  If you're the praying type, I'd appreciate your remembering Gabe.  I'm ready for my family to be back together.

  

8 comments:

Sweet Tea said...

I AM the praying type and I'm off here now to pray for Gabe, and for your family!!

Unknown said...

Si sorry hon, I know it's not what you wanted to hear..prayers it will be soon...

Anonymous said...

I am reading your story often. You and yours are in my thoughts and prayers. Keep the posts coming and take care of yourself!

M. Nelson

R.A.Gudino said...

Praying for you and your familg to be back together soon.

Kara Hoekwater said...

We have been following Gabes story and praying extra hard for his healthy healing and recovery. I can relate to the fears, questions and concerns. You are such an inspiration. Much love and prayers to our CHD Warrior!

Anonymous said...

Prayers!! Melissa

Michele said...

Praying here as well. But today, especially for you. Hospitals are hard, stress is hard and seeing your child not up to par is hard. Keep your eye on the prize and know you are not alone. You can do it! Love ya!

Anonymous said...

When I'm scrolling through my personal email at work (gasp!), I always do a little Napoleon Dynamite "Yessss!" when I see a Networked Blogs email with a new post from you. I'm thankful that you share, even on the days you don't feel like it. There are so many mommas out there trying desperately to get it right. It's good to know we're all in it together, even if sometimes we feel alone. Ongoing prayers for you!