A Terrifying Journey

Ok, so I’ve been living at Johns Hopkins hospital for a week with my son, Chance. I only expected us to be here overnight. Ha! I should have known better.

Johns Hopkins
Before surgery

Chance obviously has some challenges in life. He has cerebral palsy and epilepsy as well as intellectual disabilities. I just tell everyone that he’s like a 9 month old baby, physically and mentally. Recently he was  also diagnosed with severe sleep apnea and we thought it might help to remove his tonsils. So, we came in on a Friday and the surgery went well. He was scheduled to stay overnight in the pediatric intensive care unit (PICU).

PICU hospital stay
View from our window in PICU

Things went well the first night, but on Saturday morning he had a terrible seizure and Coded! For the uninitiated, that means his heart stopped and CPR was performed. I never thought I’d have to see CPR performed on one of my children.

Chance
CPR in action

Along with CPR comes a host of new fun things my boy has to endure, like being on a ventilator and having a needle jammed into his leg bone for quick IV access. That needle was quickly taken out after a central line was placed in his neck.

Johns Hopkins
Central line delivering meds

The central line was crucial for delivering the many meds to keep him unconscious and treat him with antibiotics, in case of infection.

Johns Hopkins hospital
Lots of meds for a little body

He was also given a urinary catheter (poor guy) and hooked up continuously to an EKG machine to check for “sub-clinical” seizures. Parents can learn lots of fancy medical terms they don’t want to know when their child is critically ill.

Johns Hopkins hospital
My child the mummy

As of this writing, it is Saturday again, one week since he coded. He was finally weened from the vent yesterday and is now on a bi-pap machine to support his breathing. I was so happy to have that tube removed, but now the real work starts for me. He’s awake and very unhappy with all of this, scooting down in the bed, throwing his arms around, trying to shake the bi-pap mask off. Also, all the antibiotics have given him terrible diarrhea, so every time he coughs there’s a mess to clean up. Fun times. 

Sick child
A dragon from Daddy

I’ll update some more later, when he’s off breathing assistance. Although that will probably take a few days as they step him down from bi-pap to c-pap to nasal cannula. See, those “fancy” medical terms again!!!

Peace. ✌

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