Everything is…

My friend was writing on Facebook about her son’s condition and said, …”Everything is something until it is nothing.” Those words rang so true to me. It calls to mind the times that Chance was having a bad time with seizures. He is non-verbal, but every hiccup or head rub or cough or sneeze would attract my attention. Is he going to have another seizure? Will he stop breathing this time? Should I rush him to the hospital or call an ambulance? 

Special needs kids
Dr. Bones

With his sensory sensitivities I can’t vacuum when he’s home. But I’ve also got to scope out the atmosphere constantly. If it’s at all windy I’ll put his hood on. He hates wind. And those goddamn leaf blowers that I call pollution spreaders, Chance hates the noise and has a fit if they’re too close.

Special needs
Chance

My time when he’s home is not my own, it’s all about him. And when he’s at school I worry and wait for the phone to ring from the nurse. 

In her blog, DifferentDream.com, Sheri Dacon says this:

Fear is a big issue, the one that haunts me, the one that lies just below the outer crust of my fragile but mostly happy life. I don’t feel depressed. I am mostly in a good place. But the surface is so thin. I live in a constant state of hypervigilance. The tiniest quake could shatter the whole thing into oblivion.

That so well represents how I feel a lot of the time, except I AM depressed. And hypervigilant with a side of PTSD. Among other things. 😜

Hypervigilance
Little Chance
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CPR on my Son – The Odessy

On February 10th I took my son to John’s Hopkins Children’s Center for a tonsillectomy. I’d like to share all my Facebook posts from this ordeal:

Here’s a prequel, while waiting for his surgery to start:

Mary Brown Pyle Zabora feeling concerned at Johns Hopkins Children’s Center.

10 February at 12:30 · Baltimore ·

Today’s the big day. Chance Campbell

#1 Day 2 – CPR

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Mary Brown Pyle Zabora added 2 new photos — at Johns Hopkins Children’s Center

11 February at 09:06 · Baltimore ·

Terrible morning. Chance Campbell had a bad seizure, he turned blue, his heart rate dropped and CPR was started. He’s OK for now but we definitely won’t be going home today.

#2 February 12th.

Poor Chance Campbell was struggling to breathe so much, he had to be intubated during the night. Please pray for him.

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 #3 Later on Feb. 12th

My son is becoming a mummy.

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#4 – Feb.13th

This is the view of Baltimore from Chance’s hospital room. He’s about the same, although the inflammation markers are really high on his blood work. Today they’re going to do a lumbar puncture and either a CT or MRI of his brain. He’s “resting” comfortably, as far as I can tell, because he is being kept unconscious.
Thank you for all the prayers and healing thoughts coming our way!

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#5 – February 14th

Chance is doing well today. He’s still intubated, but all his tests are coming up negative, even the brain CT and lumbar puncture. Today they’re going to start weaning him off some of the many meds he’s on and see how he does. 💔

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#6 – Feb. 15th – Day 5

Poor Chance Campbell. The doctors are trying to lower some of the meds to get him off the vent, so he was up most of the night, agitated and had 3 seizures. I’m exhausted.

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#7 – February 16th

Many thanks to Charles Gordon Pyle for spending the night with Chance Campbell and giving me a break. I really needed it. Also thanks to Charlie and my Mom, Christine Brown-Whelehan, for being witnesses for Chances baptism today.
Chance is still intubated, although they’ve been trying to get it out for 2 days. Maybe tomorrow? Also he developed a fever this evening. Sorry, wish I had better news. 😥😷

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Pause here while I wonder what happened to 3 days when I didn’t post. Hmmm???  He must have gotten off the vent at some point. A lot of this is a blur.

#8 – 2/19/2017

Day 9 update: Chance had a great day yesterday until the evening, when his breathing became very labored. He also developed a fever overnight. One step forward, two steps back. Hoping for a better Sunday.

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#9 – Day 11 – 2/21. I don’t know what happened on 2/20, no post.

 Wow, it’s already Tuesday! There’s no day or time in here, just moments. Chance had a great day yesterday. He got the big bi-pap mask off, which was shredding his nose, and went to a nasal cannula. He sat up in his chair for about an hour, too! Then he had an horrendous seizure early this morning. Two steps forward, one step back.

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#10 – Feb. 22nd

Many thanks to #ProjectLinus for supplying a soft and comfy blanket to my son at #JohnsHopkins Children’s Hospital.

#11 – 2/23

Good news! Chance is being moved out of ICU to a regular room today!

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I will miss all of the WONDERFUL nurses in PICU!!!

I ran into a few super heroes:

#12 February 25th – Day 15

Chance is on his way HOME! Hurrah!

This is the end of his hospitalization, but not the end to this ordeal. I brought home a very weak and very thin boy. He’s going to need a lot of support getting back to baseline.

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