Missing Gabe

I'm sad today.

It's been a rough morning.  Lots of throwing up and forcing meds and other generally unpleasant things.  We've changed bed sheets more times then I can count and Gabe won't even look at us.  I was prepared for a stressful surgery, an emotional time in ICU.  What I wasn't prepared for was this.

Watching Gabe retreat into himself.

A few times a day he will give us a tiny smirk, maybe a few words.  Quite the change from our usual spunky, sassy guy.  I didn't fully realize how much I love his munchkin voice or his big toothy grin until I hadn't heard or seen them for 72 hours.

I wished I'd spent more time memorizing his smile Friday morning.  Oh, he is such a silly boy.

Last night, Gabe was restless. 

He'd sleep in 60 minute intervals.  Waking up with each new round of meds.  He laid in the bed, awake but content most of the night.  He had his first round of oral meds around 5 AM and immediately threw them up.

Que bed change number one.

He had to have labs at 5:30 and went down to radiology for his daily chest X-ray.

We took him on a long wagon ride around the hospital and he seemed to like it.  It's hard to tell since he just sits there frowning, but when we asked if he was ready to go back he said no each time.

Once we were back in the room, he just couldn't get comfortable. Every med he got, and he's getting a lot, made him immediately throw up.  Of course he caught on to the correlation between the two and started refusing to open his mouth to take them.

We weren't sure what to do.  I mean, he needs the meds.  So we forced his mouth open a made him take them.  It was awful.  After doing that for 2 rounds of med and him throwing them up the second he swallowed them, we were decided that was obviously not helping.  It was frustrating because the nurses kept saying it was probably the taste.  But I know that wasn't it.  He would take them but the second it hit his stomach, his body rejected them.

It was so sad and he was very mad at us and I don't blame him one little bit.

We finally got the doctor to come talk to us and she said that it was likely a mix of the intense pain and discomfort of the chest tubes, the pain med cocktail, and the anesthesia still working it's way out of his system.  She put as many meds as possible on IV to give his stomach a chance to rest.

As if that wasn't enough, they also decided to split his chest tube.  

At first he had two tubes coming out of his chest that connected into one big tube that lead to one collection box.  Since one side seemed to not be draining anymore, they split each tube into it's own box so that we could measure what each tube was draining.  Splitting them didn't actually hurt him at all, but it was just another uncomfortable thing to have to go through.  If the one that seems to be done is in fact done, they will pull that one tomorrow.

Which is exactly what they will do, pull it out.  So as much as I'm glad to be down one more foreign object, I'm not looking forward to the actual process.

The nurses doing the split kept commenting on how patient and polite he was.

Normally I'd be so proud to hear that about our boy, but watching him I knew that he wasn't being polite or patient.  He was just trying his hardest to be somewhere else.  I sat in the chair and cried the whole time.  Trying my hardest to not let Gabe see but to still be there to comfort him through it.  It's awful and I'm missing my baby.

We did get a few happier moments this morning.

He stood and took 10 steps without crying.  He ignored his breakfast with Superman.  There was a popsicle.

I know his personality is still there.  

Just hiding.  It's how he is coping to deal with all this scary stuff.  He's being so brave and I am so very proud of him.  It's all just hard to watch.

I'm ready to be his very best friend again.


Anonymous said...

Awwww :( bless his heart and bless yours too!!! I can't imagine how very scary and painful this all must be - for him and also for you. Hoping you get to see some of his sass and spunk very soon! Melissa

Teresa said...

I so feel where you are coming from. Cataleya has had these moments where I'm sitting right next to her and wonder when she'll be back. Are you on the Heart Moms Facebook group? I've gotten so much support from those ladies who totally get it. Keeping your family in my thoughts.

Erika Dragich said...

I'm crying as I look at these pictures. From sadness that that sweet little one has to go through what he does; and also at the joy of knowing he has such loving devoted parents and family (of course :)) that will stand beside him each step of the way! So proud to belong to this family. Love you all!

Michelle said...

:'-( I'm so sad with you. Praying that Gabe will be back to his usual self very soon and that this will be a distant cloudy memory that only makes you so thankful for the Gabe he is. This will help you get through all the moments to come. God doesn't waste a hurt!

Butterfly Wishes Wonderland Dreams said...

aww those pictures were just so sad :( I hope Gabe is full on Gabe tomorrow. Maybe he will be over the hurdle and on his way to being spunky soon.

Prayers and Thoughts are with you guys

miamihoney said...

Aww, sorry that you are feeling sad. I am praying for peace for your heart and that Gabe returns to himself very soon. Please know that I am sending hugs and love your way.

Jen said...

Hi, I have been following your blog and am a friend of Stefenie Jacks. I just wanted you to know I've been praying for Gabe. Reading your posts takes me back to our Andrew's surgery. He's had 3, this one was his 3rd and he was 4. Same thing, his personality went away and I was so sad. It took a long time for him to smile, it was heart wrenching. So I know what you are feeling. I copied the link to his surgery from post op day 1 cause I know sometimes it helps to read that others have gone through similar things. Some night time reading for you as you sit in the hospital once Gabe is settled in and you can't sleep ;) (I know that feeling too!) Take care of that sweet boy and just know prayers are being said and he WILL come around!

Jen Huegel
Mommy to Andrew (TOF)


Kaia said...

Aww, this makes me sad. I'll pray that GABE is back soon!!

kimmer said...

I love to see the love and support flowing in to you and for Gabe! I think it's awesome that you write this all down because very soon our sassy little guy will be back in action. Patience and love...which are the very things you are giving to him every minute of every day. You are the best mama a boy could have! All of you are brave and strong! I couldn't be ore proud of each one of you.

Michele said...

Oh Nicole, I am so sorry you are sad, but as an outsider looking in, he looks great! Can you even imagine how great he will look when he feels better and smiles??! He will come back! It is just his way of processing and dealing with the stress and pain. Hang in there- you are one day closer to that smile and big personality! You are doing a GREAT job! HUGS!