Day 39 - UNM Hospital, Nice Dinner And The Dude

India and I have been in a holding pattern for 2 weeks while we wait to be flown back to Boston to get her help. India is in pain and living her life in a hospital bed, a hospital where very little is being done for her other than pumping her full of painkillers. 

But India isn't the only one suffering. The rest of my family is too. So tonight I made a nice dinner for Vikki while she was out. She returned to a nice meal complete with flowers and candles. We ate outside and had a nice evening.

YES I PUT ALL OF THIS TOGETHER...

I took about a 2 hour nap after dinner and awoke to Nikki grinning at me when I came into the living room. He had gotten out of bed and was playing with his cars. He was so happy that I was up, he wouldn't leave my side. 

The two of us hung out from 1:00 am to 6:00 am, it was a good time; I love my boy.

2002 Post Surgery - Spika Cast

Even wearing a Spika Cast, India was still smiling.

India's Little Sister Abigael Cheree Brainard

    

The Dude Has Autism...

My son Nikki has been diagnosed with Autism. 

I could tell you all the usual "God won't put more on my plate than I can handle" or "He's just the way he was meant to be", but I'd be lying. I don't believe in those sayings.

I do believe that life can be very cruel. God doesn't always protect or respect children. And that for those with disabilities, each day can be unbearable.

That being said, India and Nikki couldn't have chosen a better family to be a part of when they popped into the world. We will go to the ends of the earth to protect them and give as many smiles and laughs as humanly possible.

So I'll get up tomorrow and start the new day; hoping it's a good one for everybody.

 

Day 22 - UNM Hospital, 4:07 AM Pain

India awoke with pain again. This happens all the time, every night. But this time, a "tech" came in to take my childs blood pressure before I had time to press the "nurse" button. When the "tech" entered the room, I was repositioning India and stretching her pained legs. This "tech" asked if everything was ok, I said "no", she ran and got India's assigned nurse for help.

The assigned nurse returned without even evaluating my child with scheduled medications in hand; she'd missed the pre-determined time to medicate my child. I honestly don't know if this nurse was sleeping again but regardless, I was horrified. This same nurse had only hours before erroneously chastised me for allowing my beautiful childs pain to "get out of control" as this nurse had been sleeping in a "Patient Consult Lounge" while on duty. As she slept, I'd been pressing the "help" button on the hospital bed as I tried to relieve my childs hurt.

India has been medicated now, she is in a deep sleep. The last thing she told me was that she loved herself, she kissed me on the cheek and said that she wanted to marry her boyfriend Daniel; I told India that I loved her.

Day 22 - UNM Hospital, 12:35 AM Pain

Only minutes into the new day, India had an intense pain attack. It came on within 5 minutes. And within 5 minutes, I pushed the button for the nurse 3 times, repositioned India 4 times, stretched her legs and put on and took off her traction. 

When the nurse didn't come and India was whimpering in pain louder and louder, I went out to the empty hallway to find help. 

I found our nurse as she was coming bout of a patient consult room with a blanket wrapped around her; she'd been sleeping.

I told my nurse what was happening with India as she stood in front of me still wrapped in her blanket. 

Then the nurse began to scold me for allowing India's pain to go unchecked and get out of control. She was still wearing her nap time blanket. I couldn't believe what was coming out of her groggy mouth....

Our experience at University Of New Mexico Children's Hospital has been frightening and this mornings experience has been surreal beyond words.

1:57 AM update: The "Charge Nurse" just came in because India's feeding tube wasn't working, the machine was "beeping". I asked about India's nurse and the situation. The damn "Charge Nurse" told me that India's nurse was "cold" and that is why she was wrapped in a blanket and in a "patient consult room".  A room with an ambiance of a nice living room. "It's not meant for nurses to be in as they're bundled in blankets"!!!!

I just want to cry now, my child was in pain, I'm now afraid to go to sleep, what is wrong with this hospital....

Day 21 - UNM Hospital, Scared

We had a bad night last night. India had many pain attacks, needed lots of stretching, repositioning and comforting. We hardly slept at all.

She is having a really hard time swallowing food, it takes ten swallow attempts to just just get a spoon of pudding mixed with water down. They are telling me that it's a combination of her being exhausted and the muscles in her throat being very weak. 

The doctors want India to only take in food through her NG Tube because they're afraid of her aspirating. I'm struggling with this because I've made many different mixtures of really good and healthy pureed food that she loves. She's not aspirated whatsoever during my feedings and I'm worried that by taking her oral food away which tastes great, it's just another hit to her morale. 

Hoping for a better night tonight.

 

Day 19 & 20 - UNM Hospital, Better Weekend

Friday afternoon, I met with India's doctor to plan her care for the weekend. India's mother requested to spend the weekend with her so everybody wanted to be sure everything was in place.

We added a nighttime sleep sedative and adjusted India's pain medications. As before, it worked and India enjoyed several nights of decent sleep.

I'm going back now to resume my duties as Daddy as I've done for 15 years. And this year alone almost every single single day and night I've done just that without question. 

I'm the ONLY ONE...

India and I leave for Boston in the next day or two to seek help for her.