She Doesn't Deserve This

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Organizer: Donnie Brainard Beneficiary: India Frances Brainard

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My oldest daughters name is India Frances Brainard. She and her siblings are my life. 

India, born without issue, but was injured only weeks after entering this world at a 
hospital; physicians error

Now at the age of 15, my "baby girl" is profoundly disabled and primarily non-verbal. 

For those of us who interact with India daily, are blessed with beautiful conversations in which her gratitude is so amazing when the messages is understood. Tearful laughter and relief is often the norm by both India and those of us patiently listening.  

But it's only those who clean her body without hesitation. Race India to the hospital during seizures as her breathing ceases and lips turn blue while she looks up with incomprehensible panic - who feel the desperation. It's us who defend her within the public system and horribly damaged family that have selfish motives other than her well-being or mine; resulting in terrible results. And regardless of physical exhaustion or financial ruin, we aid India day in and day out so that she may enjoy every moment to the fullest.

Today, India is in pain and needs help. It's a gut-wrenching situation.

India does all she can to try to mitigate the hurt.  She's had me change her pants thinking it's that which is causing the "bone to bone" agony.  As India tries to find relief, she's also has me move her from wheelchair to wheelchair in the belief that it's these devices causing the torment. And when none of the these work, she holds onto me with her one good hand trembling, asking "Daddy - help, please help, owe".

This morning,  
3:00 am - Sunday December 8th, 2013.  I'm up as a result of the 5th time India has called out to me in pain in the hopes I can help her.

India has Cerebral Palsy, Seizure Disorder, Cortical Visual impairment and too many more diagnosis to waste anybodies time on now.  But I'll look all in the eye as she's in my presence and tell you that she is 
the most beautiful person and spirit to ever grace this planet that doesn't deserve what she’s enduring.

India is in dire need of help and thus the reason I'm reaching out to you.

India has dual dislocated hips, a dislocated elbow and a life threatening curvature of the spine. The cause is in part from her Cerebral Palsy and ten-fold that as a result of something that I'm still coming to terms with but not worth addressing at this point.

My child is experiencing life I'd not wish on anybody.
Until this day, I've tried to control the pain through Phenol procedures; nerve alcohol blocks.  All of which took place on the East Coast. Unfortunately, this is temporary but we needed to give my child time free of her debilitating hurt so that she could gain the strength and survive this inevitable surgery.

Equally important, I wanted my child to be a “kid” and experience going to school and making friends for as long as possible. A beautiful result is her "boyfriend" which was unexpected and brought me to my knees.
I sit here this morning reaching out to the world for help. As I once was wealthy and poured a fortune into my childs care as well as so many others.  I’m now in a dire financial position and am humbly asking for help to ensure India receives the medical care she needs. 
We have the private and state insurance in place for the next 60 days. But we are in desperate need of co-pay and day to day living assistance leading up to the intensive surgeries and during the recovery period.
The surgery can take place at Harvard Boston Children's Hospital in the next 60 days if I can find the means for the additional costs.
I'm humbled beyond words reaching out in this way but India doesn't deserve this and there is a way to take away her day to day agony. So I'm "Daddy" asking for help.
I appreciate anything you can do from financial support to emotion support.
Here is a link to what I've written so far about India's life and what happened: http://moomock.blogspot.com/
Thank you in advance for your time; it's appreciated beyond words. 


http://moomock.blogspot.com/2013/12/my-oldest-daughters-name-is-india.html













Updates

Updates

06/05/2014
by Donnie Brainard
India had a bad night again. It seems like every time we see a light at the end of the tunnel, it's followed by serious darkness.
 
She had steady pain from 10:00 pm until about 8:00 am. It wasn't the horrific screaming pain, it was just continual low level pain. We were both up most the night trying to keep her hurt under control.
 
It didn't help much that our nurse had terrible bedside manner, not to mention her forgetting and/or not wanting to sanitize her hands most of the times she came and went from our room. Sanitizing is mandatory for everybody coming and going from every child's room on this ward. It was just a couple days ago that India was on "limited contact" status. This "limited contact" was to protect India from being exposed to viruses because she was so weak.
 
India is finally sleeping now. I got her to eat some breakfast before she conked out. My little girl is very pale, more than normal. I'm feeling really frustrated. It seems like we've made very little progress since we came to University of New Mexico Children's Hospital.
<img src="https://lh5.googleusercontent.com/-K4gZ3IHdXU4/U5CLISO7OwI/AAAAAAAVNfY/NzAszhoCOAA/s640/blogger-image-458275089.jpg" alt="" border="0">


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05/30/2014
by Donnie Brainard
I was asked today what it cost to be in hospitals for 115 days. This is a hard question to answer in some ways. The quick answer is "it's not what it cost, it's what it costs..."
 
I believe that the hospitals and associated services have billed in the range of +/- $638,965.72 (six hundred thirty eight thousand, nine hundred sixty five dollars and seventy two cents). 
 
Then there is the "out of pocket" costs. This would include everything insurance wont cover. This could be something as little as buying India a bowl of hot chowder when she wouldn't eat anything else, pink nail polish to make her feel pretty, cab or train fare, clothing, toiletries, over the counter medications, business items, daily living supplies, etc. After 115 days it adds up.
 
There is the cost of not being able to work. This cost is both monetary and emotional and its hit is felt to the core. No work means no money. No work means no security. No work means no retirement. And at times, trying to keep the lights on, a roof over my families head and food on the table can be challenging.
 
The trickle down from all of the above is stress that can be crippling and tears families apart. But I know I can't leave my childs side, that could be devastating for her. So my loyalty means my life and my families lives are put on hold indefinitely so that India can have a fighting chance and a sound advocate.
 
There are a lot of people out there who would just institutionalize their child so that they could return to work and go on with their life. I couldn't live with myself if I did that. India calls for me 10 to 20 times a night by saying "Daddy, help me please Daddy". Imagine her calling for me from an institution only to hear her voice echo off the walls and nobody respond.
 
So as I'm doing for India, I'd do for any of my children if needed. And I firmly believe that we will get through this dark time and someday it will be a distant memory.
 
That's the "costs" of being in a hospital for 115 days...

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05/30/2014
by Donnie Brainard
India has had a difficult time holding down food lately. In fact, she's hardly eaten at all. She is already underweight so this has been frightening. When we placed the GTube, my expectations were that she'd "fatten" right up and we'd move on. That hasn't been the case.
 
A couple days ago, one of the doctors had a talk with me. He said that there was a chance that India had something called "SMA" - Superior Mesenteric Artery Syndrome. My India has so many things with so many abbreviations that when the doctor told me this newest possible disorder, I was very calm and to be honest more focused on my little girls pain at that moment.
 
Later in the day, a different doctor came into the room to let me know that India needed an Upper GI and that they'd go in through her GTube; now they had my attention. The doctor went on to say that they'd need to do a series of other tests to try and figure out if she has "SMA" or not.
There is a chance that she has a simple virus but the doctors have been unable to detect it yet which isn't a good sign. I say this because if they can find a virus, they can treat it. If it's "SMA", India could be in real trouble. 
 
"SMA" is considered a very rare and deadly disorder. 1 out of 3 people don't survive it. And my little girl being in the condition she is, would have a hell of a time overcoming this newest obstacle.
 
So I'm going to keep positive, get up in the morning and do my best to make her comfortable, happy, and healthy. And if we're lucky, the abbreviation "SMA" will be eliminated from our vocabulary forever.
Photos of our day today and last night.

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05/24/2014
by Donnie Brainard
One of the reasons India had the type of surgery she did this year in Boston is that it gives her a chance to dance again.

As you can see, she hasn't lost her desire to dance...

http://moomock.blogspot.com/2014/05/day-58-unm-hospital-girl-wants-to-dance.html


YMCA Dance Tonight

YMCA Dance A Few Years Ago

India's Dance Compilation

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05/12/2014
by Donnie Brainard
 
The decision has been made to insert a GTube into India's belly. She isn't getting enough nutrition and for the most part refusing to eat.  India currently has a NGTube to provide her nutrition but this hasn't worked the way we hoped and it's not a long term solution

 
The surgery will take place tomorrow and I'm scared. Not because of this procedure as it doesn't take but an hour. I'm scared because India is so fragile and the thought of another operation in less than 24 hours when she's not been able to recover from the last in January. 
 
But numerous doctors are telling me that it's necessary for her survival.
 
Normally, next week India and I would be driving up to Colorado to water the Iris and feed the Chipmunks...  This year has sucked.
 

 

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05/07/2014
by Donnie Brainard
So after my having to be in hospitals almost this entire year with India, I made the decision this past Friday to put 100% of my focus on Marion and take her to Colorado for a couple days. To a place where there is no phone, cell service, cable tv, even broadcast tv. A place we both love beyond words and a place where it was going to just be the two of us.
 
We had a wonderful time...
The Moment We Arrived
We Caught Sunset!
<img src="https://lh6.googleusercontent.com/-wwn1XEhEmHw/U2mYEcy7UiI/AAAAAAAU5vE/FvgSlCBdaXM/s640/blogger-image--267353004.jpg" alt="" width="640" height="480" border="0">
Yes, It's Heaven....
<img src="https://lh5.googleusercontent.com/-wvFV1qGCkNo/U2mXzyAYMpI/AAAAAAAU5us/pUXE53TGm3g/s640/blogger-image--1707153532.jpg" alt="" width="640" height="480" border="0">

Flat-Top
<img src="https://lh3.googleusercontent.com/-1dByEo5X0ks/U2mX-ldb0yI/AAAAAAAU5u8/W8V65UZQAbM/s640/blogger-image--1914713019.jpg" alt="" width="640" height="480" border="0">

Daddy Made A Damn Good Dinner
<img src="https://lh3.googleusercontent.com/-EDhedWqRXpA/U2mYVCw5KVI/AAAAAAAU5vc/0Atoj0SEigg/s640/blogger-image-394213947.jpg" alt="" width="480" height="640" border="0">

1st Morning View
<img src="https://lh5.googleusercontent.com/-GhAUbPk8ztg/U2mYPd9OIKI/AAAAAAAU5vU/jmLbgGg6WWU/s640/blogger-image-1132623103.jpg" alt="" width="480" height="640" border="0">
Digging For "Burners"
<img src="https://lh3.googleusercontent.com/-3fCoKtezJ-c/U2mX5YlIBrI/AAAAAAAU5u0/KNkkW7WVYKg/s640/blogger-image-1419092043.jpg" alt="" width="480" height="640" border="0">

Marion and I are back now, we are both grateful for the one-on-one time and we are both sad because we are facing "back to life, back to reality". I'm preparing to go to the hospital for the night to care for India. I can't wait to see her and I'm dreading another night in a hospital room.


 

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04/30/2014
by Donnie Brainard
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.


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04/27/2014
by Donnie BrainardShare This Update!


04/27/2014
by Donnie Brainard
















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04/27/2014
by Donnie Brainard
















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04/23/2014
by Donnie Brainard
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.

<img src="https://lh4.googleusercontent.com/-tVeaFr3DKhQ/U1b5_HHl0EI/AAAAAAAUyqM/HM40pGj5dLA/s640/blogger-image--435354398.jpg" alt="" border="0">
<img src="https://lh6.googleusercontent.com/-WpSGEPdj-3U/U1b6KVRy2pI/AAAAAAAUyqc/8W0sCGyrz8M/s640/blogger-image--141617015.jpg" alt="" border="0">


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04/22/2014
by Donnie Brainard
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....

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04/21/2014
by Donnie Brainard
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.

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04/20/2014
by Donnie Brainard
Day 14 started off very early. I'd run home from the hospital to see the kids about 1:00 am. I only live a few blocks away.  When I arrived, my son Nikki was still awake and very excited to see me. I'd not seen him in a week and he kept saying "Daddy" over and over as he stroked my face and smiled. I snuggled with my boy, thinking he'd fall asleep and then I'd run back to the hospital to look out for India. Well, I fell asleep and next thing I know, the sun was about to come up.  I jumped up and raced to the hospital to make sure India was OK. When I arrived, the first thing I heard when the doors to the ward opened was my child screaming in pain.
 
 
As quickly as I could, I repositioned India, stretched her, calmed my daughter down, gave her a drink, and got her to sleep. Then took a shower, got myself dressed and quickly drove to a friends house where my daughter Marion was staying so I could pick her up and take her to school; we cut it close.
 
 
I returned to the hospital after dropping Marion off to find India sound asleep which is a welcome sight. I was exhausted and so was she and these days sleep is worth its weight in Gold.  I literally fell into the the horribly uncomfortable hospital couch looking thingy in India's room and passed out. I was awoken about 10 minutes later by a hospital tech shaking me, asking me loudly if it was OK to wake India and take her vital signs. I put my finger to my lips, made the "ssshhhhh" noise and said "no" we're sleeping! 
 
I dozed off again and just as I went into another welcomed and less stressful dreamworld, I was awoken by a nurse shaking me saying "Mr. Brainard, you have a phone call, Mr. Brainard!". You have to understand that there is no privacy in a hospital. So when I'm awoken by another stranger as I'm trying to sleep next to my child, the first things that come to mind: "is India OK?!". Then as I try to clear the clear the fog from my head, the thoughts always crosses my mind "was I snoring, did I fart, did I have druel on my face, is there a booger in my nose, was I talking in my sleep and was I fondling myself" and on and on. All the while my senses being assaulted by the beeps of the heart monitor, the bong of the Pulse Oximeter, the whirl of the NG Tube as it pushes food into my child's stomach, the ding of the alarms in the hallway alerting nurses of patients in need (sometimes critical) and my child saying "daddy help me". It's a terrible way to wake up.
 
So I answered my call, trying to sound alert. But in all truthfulness, I was so tired and stressed out that it took everything I could to not vomit. I don't say this to be funny, I've found myself vomiting many times in the past few months from the stress. 
 
The call was from another hospital department who had been commissioned to perform a "Barium swallow study" (http://en.wikipedia.org/wiki/Barium_swallow) on India. My daughter is having a rough time eating, she's had about 8 NG Tubes (http://en.wikipedia.org/wiki/Nasogastric_intubation) placed since January and the doctors decided that it would be prudent to take a look at how her food is going down. I was told to be ready at 11:00 am.
 
Within a minute of my hanging up the phone, my head it the pillow and I was asleep. And 5 minutes later I hear India saying "help me Daddy"; she was in pain and needed to be repositioned.
 
A few hours later, another doctor showed up in our room. This doctor wanted to talk to me about having a G-Tube (http://kidshealth.org/parent/system/surgery/g_tube.html) placed into India's belly. Then the issue of a Baclofen Pump (http://www.baclofenpump.com/considering/about/why-consider/index.htm) was put forth. And after that the question was raised about the urgency of India having rods put down her spine to stop her Scoliosis (http://orthoinfo.aaos.org/topic.cfm?topic=A00638) and it's impact on her lungs and heart.
 
Not long later, I had to change India. There is no way around the pain she can experience when changing her diaper. So as quickly as I could with the help of 2 nurses, India was changed as she screamed.
 
After India's painful diaper change, she was finally comforted with stretching, positioning and meds. India called for me "daddy". When a walked over to her bed, she held up her finger that was glowing red from the attached Pulse Oximeter. India then touched her glowing finger to her left leg where her pain is coming from and said "eeee" (ET) + "click-click" of her tongue (doctor/fix) + "owie" = Can ET come and fix her pain. 
 
I kissed India on her forehead and started to cry.
 
 
 
Later that day, I went down to the in house restaurant and found that their special was green chili chowder.  This is an absolutely perfect food for India right now and she loves it. I bought the largest container they sold. I then ran across the street to a local restaurant "Golden Pride" and purchased a large contain of green chili to add to the chili chowder. From there, I ran down the block to a convenience store to buy butter and 1/2 & 1/2 to fatten up the mixture.
 
I returned to the hospital, mixed up this delicious and fattening batch of food for India and gave her the first bowl; she devoured it. 
 
After she was done, I decided to jump into the shower, mostly to relax. And when I came out into the room I knew immediatly what had happened.  The cleaning crew had come in for the night to provide service and being a bit overzealous, threw away the large containers of chowder, chili and even the butter.
 
We are flat broke right now, this was an indescribable treat for India and a needed source of calories for a 52 pound child and in a 5 minute period - gone. They threw away everything.
 
India was sleeping again so I gave the elusive rest a shot too. I enjoyed about 20 minutes when housekeeping came in and started mopping the floor, checking the trash bins and in general - making a lot of noise.
 
Then came the Barium test...
 
We put India into a reclining wheelchair and shuttled her down to another unit.The set up an ad lib lunch that normally would have been delicious.  But this lunch was coated with white Barium.
 
India was a good sport, she ate what I was told to give her as her face became covered in white. And what didn't stick to her face, rolled down her chin and onto her chest as she smiled, trying to be a good sport. And during this test, my child was having continual x-rays taken so she was having to be seated in terribly uncomfortable positions. India was a good sport and smiled while in pain.

 
After the Barium test, I took India back to our floor with the intention of getting her back in bed. When we arrived to our room, she told me "no daddy", then pointed down the hallway.  My little girl didn't want to go back into her room. So down the hallway and around the unit we went for about 45 minutes. She smiled the whole time with Barium occasionally coming out of her mouth.
 
Our walk exhausted India and she fell into a deep sleep. During her rest, the doctors returned. And during their routine discussion with me, the Attending Physician made the comment that India had only 1 IV placed during her stay. I literally felt chills because of this disturbing statement. In fact, India had 6 IVs and for each, it took a Sonogram and at least 3 attempts to pierce her veins. That is 24 attempts to insert a needle into my child's body and the doctor had no idea.

 
So after losing India's homeade food to an overzealous housekeeper, I held out hope that the kitchen staff would comply with the neutritionists order to provide my child with pureed food.  When her meal arrived it was deep fried chicken steak. Something that would kill her from choking if she ate it. I had nothing to feed my child.
Fortunatley, I had a cup of change that I'd been collecting and it was enough for me to run across the street and buy some chili at Golden Pride for India to eat. 
 
After India finished her food, she fell asleep. About 10 minutes later, an x-ray tech arrived to give India a portable x-ray of her hips. It was painful from having to position her in ways her body doesn't agree with.

Just after the x-ray tech left and we were starting to "snuggle" and watch a movie, the doctors came into the room again in mass. This is a teaching hospital so for every attending, there is at least 2 eager and exhausted resident.So the discussion of a CT Scan took place and their frustration of not being able to pinpoint what was happening with my child.
 
The minions of doctors finally left, India and I began to settle back into a movie marathon when the "Barium" team stormed into the room. They in all reality are amazing people with nothing but good intentions. But their timing was horrible.
 
The "Bariums" as I call them now, spent about 30 minutes instructing us on how to properly feed India based on their study. As grateful as I am and happy for their help, what they instructed us to do was nothing more than "cut and paste" instructions that did nothing for India.
 
Not long after the "Bariums" left, India's pain broke through the serious regiment of painkillers. It was horrible and set a lot of people racing around trying to help. And then the unthinkable happened; India's breathing almost stopped.
 
The nurse in the room at the time, turned to her student and said "get help NOW" as she started to position India for some sort of resesitation; I started to cry.
 
After numerous nurses piled into our room to help India she was stable again, I watched as the nurse who called for help stood there trying to do maintenance on India's NG Tube. It was difficult for her because she was shaking so hard.

 
An hour later, India and I were settling down and exhausted. She looked terrible and for good reason; it was a long day. I went into the bathroom to take a shower and when I returned I looked onto my child with disbelief. Somehow, India had pulled out her feeding tube. It was resting on her chest with stomach fluids draining onto her belly.  The tape holding the NG Tube had become tangled into her hair and eventually had to be cut out.
My wife asks me to take her on our 1st date in 2014; with children. I have to decline date because of CT Scan that the doctors have ordered. The CT scan is cancelled and I'm not notified. Luckily, I salvage my date night. 
After returning from my date, I'm up for most of the night because India has multiple pain breakthroughs. India didn't respond to any of the medications.
 
3:45 am a blood tech loudly comes into our room. India had just fallen to sleep. The tech went straight over to India to start a blood draw. I asked what she was doing because there was no blood draw scheduled. The tech began to aggressively tell me she had to take my childs blood because of the helicopter that had crashed into the building the day before; it was bizarre. I kicked her out of the room. Turns out she was on the wrong floor and wrong room...
 

9:00 am I take a shower in the dark because all non-vital power is shut down because of repairs needed after the helicopter crash at our hospital.
 
 
 

 
 



 
 
 

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04/20/2014
by Donnie Brainard
Day 14 started off very early. I'd run home from the hospital to see the kids about 1:00 am. I only live a few blocks away.  When I arrived, my son Nikki was still awake and very excited to see me. I'd not seen him in a week and he kept saying "Daddy" over and over as he stroked my face and smiled. I snuggled with my boy, thinking he'd fall asleep and then I'd run back to the hospital to look out for India. Well, I fell asleep and next thing I know, the sun was about to come up.  I jumped up and raced to the hospital to make sure India was OK. When I arrived, the first thing I heard when the doors to the ward opened was my child screaming in pain.
 
 
As quickly as I could, I repositioned India, stretched her, calmed my daughter down, gave her a drink, and got her to sleep. Then took a shower, got myself dressed and quickly drove to a friends house where my daughter Marion was staying so I could pick her up and take her to school; we cut it close.
 
 
I returned to the hospital after dropping Marion off to find India sound asleep which is a welcome sight. I was exhausted and so was she and these days sleep is worth its weight in Gold.  I literally fell into the the horribly uncomfortable hospital couch looking thingy in India's room and passed out. I was awoken about 10 minutes later by a hospital tech shaking me, asking me loudly if it was OK to wake India and take her vital signs. I put my finger to my lips, made the "ssshhhhh" noise and said "no" we're sleeping! 
 
I dozed off again and just as I went into another welcomed and less stressful dreamworld, I was awoken by a nurse shaking me saying "Mr. Brainard, you have a phone call, Mr. Brainard!". You have to understand that there is no privacy in a hospital. So when I'm awoken by another stranger as I'm trying to sleep next to my child, the first things that come to mind: "is India OK?!". Then as I try to clear the clear the fog from my head, the thoughts always crosses my mind "was I snoring, did I fart, did I have druel on my face, is there a booger in my nose, was I talking in my sleep and was I fondling myself" and on and on. All the while my senses being assaulted by the beeps of the heart monitor, the bong of the Pulse Oximeter, the whirl of the NG Tube as it pushes food into my child's stomach, the ding of the alarms in the hallway alerting nurses of patients in need (sometimes critical) and my child saying "daddy help me". It's a terrible way to wake up.
 
So I answered my call, trying to sound alert. But in all truthfulness, I was so tired and stressed out that it took everything I could to not vomit. I don't say this to be funny, I've found myself vomiting many times in the past few months from the stress. 
 
The call was from another hospital department who had been commissioned to perform a "Barium swallow study" (http://en.wikipedia.org/wiki/Barium_swallow) on India. My daughter is having a rough time eating, she's had about 8 NG Tubes (http://en.wikipedia.org/wiki/Nasogastric_intubation) placed since January and the doctors decided that it would be prudent to take a look at how her food is going down. I was told to be ready at 11:00 am.
 
Within a minute of my hanging up the phone, my head it the pillow and I was asleep. And 5 minutes later I hear India saying "help me Daddy"; she was in pain and needed to be repositioned.
 
A few hours later, another doctor showed up in our room. This doctor wanted to talk to me about having a G-Tube (http://kidshealth.org/parent/system/surgery/g_tube.html) placed into India's belly. Then the issue of a Baclofen Pump (http://www.baclofenpump.com/considering/about/why-consider/index.htm) was put forth. And after that the question was raised about the urgency of India having rods put down her spine to stop her Scoliosis (http://orthoinfo.aaos.org/topic.cfm?topic=A00638) and it's impact on her lungs and heart.
 
Not long later, I had to change India. There is no way around the pain she can experience when changing her diaper. So as quickly as I could with the help of 2 nurses, India was changed as she screamed.
 
After India's painful diaper change, she was finally comforted with stretching, positioning and meds. India called for me "daddy". When a walked over to her bed, she held up her finger that was glowing red from the attached Pulse Oximeter. India then touched her glowing finger to her left leg where her pain is coming from and said "eeee" (ET) + "click-click" of her tongue (doctor/fix) + "owie" = Can ET come and fix her pain. 
 
I kissed India on her forehead and started to cry.
 
 
 
Later that day, I went down to the in house restaurant and found that their special was green chili chowder.  This is an absolutely perfect food for India right now and she loves it. I bought the largest container they sold. I then ran across the street to a local restaurant "Golden Pride" and purchased a large contain of green chili to add to the chili chowder. From there, I ran down the block to a convenience store to buy butter and 1/2 & 1/2 to fatten up the mixture.
 
I returned to the hospital, mixed up this delicious and fattening batch of food for India and gave her the first bowl; she devoured it. 
 
After she was done, I decided to jump into the shower, mostly to relax. And when I came out into the room I knew immediatly what had happened.  The cleaning crew had come in for the night to provide service and being a bit overzealous, threw away the large containers of chowder, chili and even the butter.
 
We are flat broke right now, this was an indescribable treat for India and a needed source of calories for a 52 pound child and in a 5 minute period - gone. They threw away everything.
 
India was sleeping again so I gave the elusive rest a shot too. I enjoyed about 20 minutes when housekeeping came in and started mopping the floor, checking the trash bins and in general - making a lot of noise.
 
Then came the Barium test...
 
We put India into a reclining wheelchair and shuttled her down to another unit.The set up an ad lib lunch that normally would have been delicious.  But this lunch was coated with white Barium.
 
India was a good sport, she ate what I was told to give her as her face became covered in white. And what didn't stick to her face, rolled down her chin and onto her chest as she smiled, trying to be a good sport. And during this test, my child was having continual x-rays taken so she was having to be seated in terribly uncomfortable positions. India was a good sport and smiled while in pain.

 
After the Barium test, I took India back to our floor with the intention of getting her back in bed. When we arrived to our room, she told me "no daddy", then pointed down the hallway.  My little girl didn't want to go back into her room. So down the hallway and around the unit we went for about 45 minutes. She smiled the whole time with Barium occasionally coming out of her mouth.
 
Our walk exhausted India and she fell into a deep sleep. During her rest, the doctors returned. And during their routine discussion with me, the Attending Physician made the comment that India had only 1 IV placed during her stay. I literally felt chills because of this disturbing statement. In fact, India had 6 IVs and for each, it took a Sonogram and at least 3 attempts to pierce her veins. That is 24 attempts to insert a needle into my child's body and the doctor had no idea.

 
So after losing India's homeade food to an overzealous housekeeper, I held out hope that the kitchen staff would comply with the neutritionists order to provide my child with pureed food.  When her meal arrived it was deep fried chicken steak. Something that would kill her from choking if she ate it. I had nothing to feed my child.
Fortunatley, I had a cup of change that I'd been collecting and it was enough for me to run across the street and buy some chili at Golden Pride for India to eat. 
 
After India finished her food, she fell asleep. About 10 minutes later, an x-ray tech arrived to give India a portable x-ray of her hips. It was painful from having to position her in ways her body doesn't agree with.

Just after the x-ray tech left and we were starting to "snuggle" and watch a movie, the doctors came into the room again in mass. This is a teaching hospital so for every attending, there is at least 2 eager and exhausted resident.So the discussion of a CT Scan took place and their frustration of not being able to pinpoint what was happening with my child.
 
The minions of doctors finally left, India and I began to settle back into a movie marathon when the "Barium" team stormed into the room. They in all reality are amazing people with nothing but good intentions. But their timing was horrible.
 
The "Bariums" as I call them now, spent about 30 minutes instructing us on how to properly feed India based on their study. As grateful as I am and happy for their help, what they instructed us to do was nothing more than "cut and paste" instructions that did nothing for India.
 
Not long after the "Bariums" left, India's pain broke through the serious regiment of painkillers. It was horrible and set a lot of people racing around trying to help. And then the unthinkable happened; India's breathing almost stopped.
 
The nurse in the room at the time, turned to her student and said "get help NOW" as she started to position India for some sort of resesitation; I started to cry.
 
After numerous nurses piled into our room to help India she was stable again, I watched as the nurse who called for help stood there trying to do maintenance on India's NG Tube. It was difficult for her because she was shaking so hard.

 
An hour later, India and I were settling down and exhausted. She looked terrible and for good reason; it was a long day. I went into the bathroom to take a shower and when I returned I looked onto my child with disbelief. Somehow, India had pulled out her feeding tube. It was resting on her chest with stomach fluids draining onto her belly.  The tape holding the NG Tube had become tangled into her hair and eventually had to be cut out.
My wife asks me to take her on our 1st date in 2014; with children. I have to decline date because of CT Scan that the doctors have ordered. The CT scan is cancelled and I'm not notified. Luckily, I salvage my date night. 
After returning from my date, I'm up for most of the night because India has multiple pain breakthroughs. India didn't respond to any of the medications.
 
3:45 am a blood tech loudly comes into our room. India had just fallen to sleep. The tech went straight over to India to start a blood draw. I asked what she was doing because there was no blood draw scheduled. The tech began to aggressively tell me she had to take my childs blood because of the helicopter that had crashed into the building the day before; it was bizarre. I kicked her out of the room. Turns out she was on the wrong floor and wrong room...
 

9:00 am I take a shower in the dark because all non-vital power is shut down because of repairs needed after the helicopter crash at our hospital.
 
 
 

 
 



 
 
 

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04/20/2014
by Donnie Brainard
Day 14 started off very early. I'd run home from the hospital to see the kids about 1:00 am. I only live a few blocks away.  When I arrived, my son Nikki was still awake and very excited to see me. I'd not seen him in a week and he kept saying "Daddy" over and over as he stroked my face and smiled. I snuggled with my boy, thinking he'd fall asleep and then I'd run back to the hospital to look out for India. Well, I fell asleep and next thing I know, the sun was about to come up.  I jumped up and raced to the hospital to make sure India was OK. When I arrived, the first thing I heard when the doors to the ward opened was my child screaming in pain.
 
 
As quickly as I could, I repositioned India, stretched her, calmed my daughter down, gave her a drink, and got her to sleep. Then took a shower, got myself dressed and quickly drove to a friends house where my daughter Marion was staying so I could pick her up and take her to school; we cut it close.
 
 
I returned to the hospital after dropping Marion off to find India sound asleep which is a welcome sight. I was exhausted and so was she and these days sleep is worth its weight in Gold.  I literally fell into the the horribly uncomfortable hospital couch looking thingy in India's room and passed out. I was awoken about 10 minutes later by a hospital tech shaking me, asking me loudly if it was OK to wake India and take her vital signs. I put my finger to my lips, made the "ssshhhhh" noise and said "no" we're sleeping! 
 
I dozed off again and just as I went into another welcomed and less stressful dreamworld, I was awoken by a nurse shaking me saying "Mr. Brainard, you have a phone call, Mr. Brainard!". You have to understand that there is no privacy in a hospital. So when I'm awoken by another stranger as I'm trying to sleep next to my child, the first things that come to mind: "is India OK?!". Then as I try to clear the clear the fog from my head, the thoughts always crosses my mind "was I snoring, did I fart, did I have druel on my face, is there a booger in my nose, was I talking in my sleep and was I fondling myself" and on and on. All the while my senses being assaulted by the beeps of the heart monitor, the bong of the Pulse Oximeter, the whirl of the NG Tube as it pushes food into my child's stomach, the ding of the alarms in the hallway alerting nurses of patients in need (sometimes critical) and my child saying "daddy help me". It's a terrible way to wake up.
 
So I answered my call, trying to sound alert. But in all truthfulness, I was so tired and stressed out that it took everything I could to not vomit. I don't say this to be funny, I've found myself vomiting many times in the past few months from the stress. 
 
The call was from another hospital department who had been commissioned to perform a "Barium swallow study" (http://en.wikipedia.org/wiki/Barium_swallow) on India. My daughter is having a rough time eating, she's had about 8 NG Tubes (http://en.wikipedia.org/wiki/Nasogastric_intubation) placed since January and the doctors decided that it would be prudent to take a look at how her food is going down. I was told to be ready at 11:00 am.
 
Within a minute of my hanging up the phone, my head it the pillow and I was asleep. And 5 minutes later I hear India saying "help me Daddy"; she was in pain and needed to be repositioned.
 
A few hours later, another doctor showed up in our room. This doctor wanted to talk to me about having a G-Tube (http://kidshealth.org/parent/system/surgery/g_tube.html) placed into India's belly. Then the issue of a Baclofen Pump (http://www.baclofenpump.com/considering/about/why-consider/index.htm) was put forth. And after that the question was raised about the urgency of India having rods put down her spine to stop her Scoliosis (http://orthoinfo.aaos.org/topic.cfm?topic=A00638) and it's impact on her lungs and heart.
 
Not long later, I had to change India. There is no way around the pain she can experience when changing her diaper. So as quickly as I could with the help of 2 nurses, India was changed as she screamed.
 
After India's painful diaper change, she was finally comforted with stretching, positioning and meds. India called for me "daddy". When a walked over to her bed, she held up her finger that was glowing red from the attached Pulse Oximeter. India then touched her glowing finger to her left leg where her pain is coming from and said "eeee" (ET) + "click-click" of her tongue (doctor/fix) + "owie" = Can ET come and fix her pain. 
 
I kissed India on her forehead and started to cry.
 
 
 
Later that day, I went down to the in house restaurant and found that their special was green chili chowder.  This is an absolutely perfect food for India right now and she loves it. I bought the largest container they sold. I then ran across the street to a local restaurant "Golden Pride" and purchased a large contain of green chili to add to the chili chowder. From there, I ran down the block to a convenience store to buy butter and 1/2 & 1/2 to fatten up the mixture.
 
I returned to the hospital, mixed up this delicious and fattening batch of food for India and gave her the first bowl; she devoured it. 
 
After she was done, I decided to jump into the shower, mostly to relax. And when I came out into the room I knew immediatly what had happened.  The cleaning crew had come in for the night to provide service and being a bit overzealous, threw away the large containers of chowder, chili and even the butter.
 
We are flat broke right now, this was an indescribable treat for India and a needed source of calories for a 52 pound child and in a 5 minute period - gone. They threw away everything.
 
India was sleeping again so I gave the elusive rest a shot too. I enjoyed about 20 minutes when housekeeping came in and started mopping the floor, checking the trash bins and in general - making a lot of noise.
 
Then came the Barium test...
 
We put India into a reclining wheelchair and shuttled her down to another unit.The set up an ad lib lunch that normally would have been delicious.  But this lunch was coated with white Barium.
 
India was a good sport, she ate what I was told to give her as her face became covered in white. And what didn't stick to her face, rolled down her chin and onto her chest as she smiled, trying to be a good sport. And during this test, my child was having continual x-rays taken so she was having to be seated in terribly uncomfortable positions. India was a good sport and smiled while in pain.

 
After the Barium test, I took India back to our floor with the intention of getting her back in bed. When we arrived to our room, she told me "no daddy", then pointed down the hallway.  My little girl didn't want to go back into her room. So down the hallway and around the unit we went for about 45 minutes. She smiled the whole time with Barium occasionally coming out of her mouth.
 
Our walk exhausted India and she fell into a deep sleep. During her rest, the doctors returned. And during their routine discussion with me, the Attending Physician made the comment that India had only 1 IV placed during her stay. I literally felt chills because of this disturbing statement. In fact, India had 6 IVs and for each, it took a Sonogram and at least 3 attempts to pierce her veins. That is 24 attempts to insert a needle into my child's body and the doctor had no idea.

 
So after losing India's homeade food to an overzealous housekeeper, I held out hope that the kitchen staff would comply with the neutritionists order to provide my child with pureed food.  When her meal arrived it was deep fried chicken steak. Something that would kill her from choking if she ate it. I had nothing to feed my child.
Fortunatley, I had a cup of change that I'd been collecting and it was enough for me to run across the street and buy some chili at Golden Pride for India to eat. 
 
After India finished her food, she fell asleep. About 10 minutes later, an x-ray tech arrived to give India a portable x-ray of her hips. It was painful from having to position her in ways her body doesn't agree with.

Just after the x-ray tech left and we were starting to "snuggle" and watch a movie, the doctors came into the room again in mass. This is a teaching hospital so for every attending, there is at least 2 eager and exhausted resident.So the discussion of a CT Scan took place and their frustration of not being able to pinpoint what was happening with my child.
 
The minions of doctors finally left, India and I began to settle back into a movie marathon when the "Barium" team stormed into the room. They in all reality are amazing people with nothing but good intentions. But their timing was horrible.
 
The "Bariums" as I call them now, spent about 30 minutes instructing us on how to properly feed India based on their study. As grateful as I am and happy for their help, what they instructed us to do was nothing more than "cut and paste" instructions that did nothing for India.
 
Not long after the "Bariums" left, India's pain broke through the serious regiment of painkillers. It was horrible and set a lot of people racing around trying to help. And then the unthinkable happened; India's breathing almost stopped.
 
The nurse in the room at the time, turned to her student and said "get help NOW" as she started to position India for some sort of resesitation; I started to cry.
 
After numerous nurses piled into our room to help India she was stable again, I watched as the nurse who called for help stood there trying to do maintenance on India's NG Tube. It was difficult for her because she was shaking so hard.

 
An hour later, India and I were settling down and exhausted. She looked terrible and for good reason; it was a long day. I went into the bathroom to take a shower and when I returned I looked onto my child with disbelief. Somehow, India had pulled out her feeding tube. It was resting on her chest with stomach fluids draining onto her belly.  The tape holding the NG Tube had become tangled into her hair and eventually had to be cut out.
My wife asks me to take her on our 1st date in 2014; with children. I have to decline date because of CT Scan that the doctors have ordered. The CT scan is cancelled and I'm not notified. Luckily, I salvage my date night. 
After returning from my date, I'm up for most of the night because India has multiple pain breakthroughs. India didn't respond to any of the medications.
 
3:45 am a blood tech loudly comes into our room. India had just fallen to sleep. The tech went straight over to India to start a blood draw. I asked what she was doing because there was no blood draw scheduled. The tech began to aggressively tell me she had to take my childs blood because of the helicopter that had crashed into the building the day before; it was bizarre. I kicked her out of the room. Turns out she was on the wrong floor and wrong room...
 

9:00 am I take a shower in the dark because all non-vital power is shut down because of repairs needed after the helicopter crash at our hospital.
 
 
 

 
 



 
 
 

Share This Update!


04/19/2014
by Donnie Brainard
Day 14 started off very early. I'd run home from the hospital to see the kids about 1:00 am. I only live a few blocks away.  When I arrived, my son Nikki was still awake and very excited to see me. I'd not seen him in a week and he kept saying "Daddy" over and over as he stroked my face and smiled. I snuggled with my boy, thinking he'd fall asleep and then I'd run back to the hospital to look out for India. Well, I fell asleep and next thing I know, the sun was about to come up.  I jumped up and raced to the hospital to make sure India was OK. When I arrived, the first thing I heard when the doors to the ward opened was my child screaming in pain.
 
 
As quickly as I could, I repositioned India, stretched her, calmed my daughter down, gave her a drink, and got her to sleep. Then took a shower, got myself dressed and quickly drove to a friends house where my daughter Marion was staying so I could pick her up and take her to school; we cut it close.
 
 
I returned to the hospital after dropping Marion off to find India sound asleep which is a welcome sight. I was exhausted and so was she and these days sleep is worth its weight in Gold.  I literally fell into the the horribly uncomfortable hospital couch looking thingy in India's room and passed out. I was awoken about 10 minutes later by a hospital tech shaking me, asking me loudly if it was OK to wake India and take her vital signs. I put my finger to my lips, made the "ssshhhhh" noise and said "no" we're sleeping! 
 
I dozed off again and just as I went into another welcomed and less stressful dreamworld, I was awoken by a nurse shaking me saying "Mr. Brainard, you have a phone call, Mr. Brainard!". You have to understand that there is no privacy in a hospital. So when I'm awoken by another stranger as I'm trying to sleep next to my child, the first things that come to mind: "is India OK?!". Then as I try to clear the clear the fog from my head, the thoughts always crosses my mind "was I snoring, did I fart, did I have druel on my face, is there a booger in my nose, was I talking in my sleep and was I fondling myself" and on and on. All the while my senses being assaulted by the beeps of the heart monitor, the bong of the Pulse Oximeter, the whirl of the NG Tube as it pushes food into my child's stomach, the ding of the alarms in the hallway alerting nurses of patients in need (sometimes critical) and my child saying "daddy help me". It's a terrible way to wake up.
 
So I answered my call, trying to sound alert. But in all truthfulness, I was so tired and stressed out that it took everything I could to not vomit. I don't say this to be funny, I've found myself vomiting many times in the past few months from the stress. 
 
The call was from another hospital department who had been commissioned to perform a "Barium swallow study" (http://en.wikipedia.org/wiki/Barium_swallow) on India. My daughter is having a rough time eating, she's had about 8 NG Tubes (http://en.wikipedia.org/wiki/Nasogastric_intubation) placed since January and the doctors decided that it would be prudent to take a look at how her food is going down. I was told to be ready at 11:00 am.
 
Within a minute of my hanging up the phone, my head it the pillow and I was asleep. And 5 minutes later I hear India saying "help me Daddy"; she was in pain and needed to be repositioned.
 
A few hours later, another doctor showed up in our room. This doctor wanted to talk to me about having a G-Tube (http://kidshealth.org/parent/system/surgery/g_tube.html) placed into India's belly. Then the issue of a Baclofen Pump (http://www.baclofenpump.com/considering/about/why-consider/index.htm) was put forth. And after that the question was raised about the urgency of India having rods put down her spine to stop her Scoliosis (http://orthoinfo.aaos.org/topic.cfm?topic=A00638) and it's impact on her lungs and heart.
 
Not long later, I had to change India. There is no way around the pain she can experience when changing her diaper. So as quickly as I could with the help of 2 nurses, India was changed as she screamed.
 
After India's painful diaper change, she was finally comforted with stretching, positioning and meds. India called for me "daddy". When a walked over to her bed, she held up her finger that was glowing red from the attached Pulse Oximeter. India then touched her glowing finger to her left leg where her pain is coming from and said "eeee" (ET) + "click-click" of her tongue (doctor/fix) + "owie" = Can ET come and fix her pain. 
 
I kissed India on her forehead and started to cry.
 
 
 
Later that day, I went down to the in house restaurant and found that their special was green chili chowder.  This is an absolutely perfect food for India right now and she loves it. I bought the largest container they sold. I then ran across the street to a local restaurant "Golden Pride" and purchased a large contain of green chili to add to the chili chowder. From there, I ran down the block to a convenience store to buy butter and 1/2 & 1/2 to fatten up the mixture.
 
I returned to the hospital, mixed up this delicious and fattening batch of food for India and gave her the first bowl; she devoured it. 
 
After she was done, I decided to jump into the shower, mostly to relax. And when I came out into the room I knew immediatly what had happened.  The cleaning crew had come in for the night to provide service and being a bit overzealous, threw away the large containers of chowder, chili and even the butter.
 
We are flat broke right now, this was an indescribable treat for India and a needed source of calories for a 52 pound child and in a 5 minute period - gone. They threw away everything.
 
India was sleeping again so I gave the elusive rest a shot too. I enjoyed about 20 minutes when housekeeping came in and started mopping the floor, checking the trash bins and in general - making a lot of noise.
 
Then came the Barium test...
 
We put India into a reclining wheelchair and shuttled her down to another unit.The set up an ad lib lunch that normally would have been delicious.  But this lunch was coated with white Barium.
 
India was a good sport, she ate what I was told to give her as her face became covered in white. And what didn't stick to her face, rolled down her chin and onto her chest as she smiled, trying to be a good sport. And during this test, my child was having continual x-rays taken so she was having to be seated in terribly uncomfortable positions. India was a good sport and smiled while in pain.

 
After the Barium test, I took India back to our floor with the intention of getting her back in bed. When we arrived to our room, she told me "no daddy", then pointed down the hallway.  My little girl didn't want to go back into her room. So down the hallway and around the unit we went for about 45 minutes. She smiled the whole time with Barium occasionally coming out of her mouth.
 
Our walk exhausted India and she fell into a deep sleep. During her rest, the doctors returned. And during their routine discussion with me, the Attending Physician made the comment that India had only 1 IV placed during her stay. I literally felt chills because of this disturbing statement. In fact, India had 6 IVs and for each, it took a Sonogram and at least 3 attempts to pierce her veins. That is 24 attempts to insert a needle into my child's body and the doctor had no idea.

 
So after losing India's homeade food to an overzealous housekeeper, I held out hope that the kitchen staff would comply with the neutritionists order to provide my child with pureed food.  When her meal arrived it was deep fried chicken steak. Something that would kill her from choking if she ate it. I had nothing to feed my child.
Fortunatley, I had a cup of change that I'd been collecting and it was enough for me to run across the street and buy some chili at Golden Pride for India to eat. 
 
After India finished her food, she fell asleep. About 10 minutes later, an x-ray tech arrived to give India a portable x-ray of her hips. It was painful from having to position her in ways her body doesn't agree with.

Just after the x-ray tech left and we were starting to "snuggle" and watch a movie, the doctors came into the room again in mass. This is a teaching hospital so for every attending, there is at least 2 eager and exhausted resident.So the discussion of a CT Scan took place and their frustration of not being able to pinpoint what was happening with my child.
 
The minions of doctors finally left, India and I began to settle back into a movie marathon when the "Barium" team stormed into the room. They in all reality are amazing people with nothing but good intentions. But their timing was horrible.
 
The "Bariums" as I call them now, spent about 30 minutes instructing us on how to properly feed India based on their study. As grateful as I am and happy for their help, what they instructed us to do was nothing more than "cut and paste" instructions that did nothing for India.
 
Not long after the "Bariums" left, India's pain broke through the serious regiment of painkillers. It was horrible and set a lot of people racing around trying to help. And then the unthinkable happened; India's breathing almost stopped.
 
The nurse in the room at the time, turned to her student and said "get help NOW" as she started to position India for some sort of resesitation; I started to cry.
 
After numerous nurses piled into our room to help India she was stable again, I watched as the nurse who called for help stood there trying to do maintenance on India's NG Tube. It was difficult for her because she was shaking so hard.

 
An hour later, India and I were settling down and exhausted. She looked terrible and for good reason; it was a long day. I went into the bathroom to take a shower and when I returned I looked onto my child with disbelief. Somehow, India had pulled out her feeding tube. It was resting on her chest with stomach fluids draining onto her belly.  The tape holding the NG Tube had become tangled into her hair and eventually had to be cut out.
My wife asks me to take her on our 1st date in 2014; with children. I have to decline date because of CT Scan that the doctors have ordered. The CT scan is cancelled and I'm not notified. Luckily, I salvage my date night. 
After returning from my date, I'm up for most of the night because India has multiple pain breakthroughs. India didn't respond to any of the medications.
 
3:45 am a blood tech loudly comes into our room. India had just fallen to sleep. The tech went straight over to India to start a blood draw. I asked what she was doing because there was no blood draw scheduled. The tech began to aggressively tell me she had to take my childs blood because of the helicopter that had crashed into the building the day before; it was bizarre. I kicked her out of the room. Turns out she was on the wrong floor and wrong room...
 

9:00 am I take a shower in the dark because all non-vital power is shut down because of repairs needed after the helicopter crash at our hospital.
 
 
 

 
 



 
 
 

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04/19/2014
by Donnie Brainard
The term "Failure to Thrive" is being used with my child now.  It's a very frightening term to hear but not as frightening as actually watching my little girls health plummet.

University of New Mexico Children's Hospital has been working with Harvard Boston Children's Hospital to try to figure out what is going on with India and how to make her better.

The decision has been made to fly India and myself back to Boston ASAP via a Medical Transport.


I'm frightened beyond words.
 



India last year about this time helping me open our Grandparents Cabin for the summer. She loves to water the Iris that have been in the family for generations.



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04/14/2014
by Donnie BrainardShare This Update!


04/11/2014
by Donnie Brainard
After months, India and Daniel had their reunion.  

India was absolutley exhausted at the time after a long day. But you can see the joy and love. She lasted about an hour and is still talking about it.




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04/11/2014
by Donnie Brainard
http://moomock.blogspot.com/2014/04/day-13-unm-hospital-daniel-india-reunion.html
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04/07/2014
by Donnie Brainard
The last 3 days have had some beautiful moments.
 
India had a suprise visit from her boyfriends mother. Daniels mother came to the hospital to let India know that daniel is going to come visit her this coming week.  India couldn't stop smiling as she stared out the window thinking about her love.
 
India's teachers Mrs. Lydia and Mr. Stuart dropped in to see their good friend. When they came into the room, India couldn't believe what she was seeing was real.
 
My dear friend Ray made the 600 mile drive to come support me and my family. I can't begin to say just how much his being here helped us. 
 
 
 
 
 
 
 
 
 
 
 








 
 












 

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04/07/2014
by Donnie Brainard
India slept a whole lot today. We aren't sure if it's from her new meds or if it's from exhaustion brought on by the horrible pain she's been experiencing. 
 
She had another IV line fail, causing her arm to swell up with fluids. It's the 6th line to go bad in 4 days and this one was very painful. You can see in the photos below that India is holding her arm tightly.
 
India's weight is a huge concern, she is hovering around 55 pounds at 15 years of age. I put out a post on Facebook asking family and friends to bring food to the hospital so I could fatten India up. My little girl just isn't very interested in hospital food. And to be honest, we were both lonely and wanted some company.
 
I guess the past year has taken it's toll on me. I was told tonight that I was looking "chunky" by my old pal Barbara from Garcias on Central and my friend "Heidi" aka "1 of 9" said that I was looking old...
 
I'm hoping for another good day tomorrow, we deserve it.
 
India trying to work the pain out of her arm after the IV failed.
India's swollen arm from the IV failing.
I wonder if this is how India sees her shadow.
Crazy Buddhist sister having dinner with India.








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04/07/2014
by Donnie Brainard
The doctors are now looking at the possibility of India having nerve damage and that being the cause of her pain. They are starting her on Gabapentin in a few minutes to try and target this debilitating pain.
 
We weighed India today and she has gone from 67+/- pounds to 55+/- pounds. It's very difficult to get India to eat now. Imagine your 15 year old weighing 55 pounds.
India slept for most of the day; she's sleeping now. Neither India nor I have had more than 2 hours of sleep at a time in weeks; we are exhausted.
 
She is incredibly pail and fragile. As I sit and watch her sleep, I pray that India will regain the strength to recover and get on with life.
 
And all the while that this living nightmare is taking place, it's only me who is by her side each and every day; no excuses.
 
This breaks my heart and if I'm distraught, imagine how India feels.

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04/07/2014
by Donnie Brainard
India isn't doing very well.  Her pain is back and wearing her out. None of the narcotics are working.
 
The doctors now think it's possibly nerve damage of some sort. They are moving to a different group of drugs that focus on the nerves. 
India and I didn't sleep again last night for the exception of 10 minutes her and 20 minutes there. We are exhausted beyond belief. The major pain last night started at 2:00 am. She is just now calming down.
 
My little girl can only handle so much.

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04/07/2014
by Donnie BrainardShare This Update!


04/07/2014
by Donnie Brainard

 
India had the worst pain attacks she's ever had in her life today. When it happened, they were so jolting that the physical reaction for those who were in the hospital room was frightening. And the pain didn't stop. She screamed in agony for most of the day, into the night and early morning.
 
I prepared myself at one point for my little girl to die. I could see the sparkle in her eyes disappear, She had never done that before.

 
Late in the evening, India began to moan. We realized that her IV had failed and the IV fluids were filling her wrist, hand and forearm with fluids. Her forearm began to look like a balloon.
So at 1:30 am, doctors and nurses were trying to place a new line. It took them hours and my child being stuck with needles over and over. They brought in an ultrasound to locate a good vein which didn't help.  A line was finally placed in India's shoulder.

Her arms are riddled with puncture marks from failed attempts to place an IV...



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04/07/2014
by Donnie BrainardShare This Update!


04/07/2014
by Donnie Brainard
http://moomock.blogspot.com/2014/03/back-in-hospital.html
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03/25/2014
by Donnie Brainard
India's hip surgery is done and we are home after 2 months in Boston. India will be recovering for many months and require around the clock care.  Soon, India will be facing another procedure to place rods along her spine. Indias' Scoliosis is at the point that it's putting dangerous stress on her heart and lungs, not to mention painful.
 
We have a long road ahead of us and are grateful beyond words for your support.
 

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03/25/2014
by Donnie Brainard
After 57 days in Boston, India and I were finally going home. It was a very emotional day for both of us. We had made friends with some of the most amazing people imaginable.
 
A trip that was supposed to last no more than 21 days turned into something I'll never forget.  
 
When we said our goodbye's to 10 Northwest at Harvard Boston Children's Hospital, it was all I could do to not have 57 days of intense emotions, highs and lows come rushing out of me.
 
Saying goodbye....
 
 

Headed home...



Home...








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03/25/2014
by Donnie Brainard
Pre-Hip Surgery X-Rays



Post Hip Surgery X-Rays



Spine (Scoliosis) X-Rays



India's hip surgery is done and we are home after 2 months in Boston. India will be recovering for many months and require around the clock care.  Soon, India will be facing another procedure to place rods along her spine. Indias' Scoliosis is at the point that it's putting dangerous stress on her heart and lungs, not to mention painful.
 
We have a long road ahead of us and are grateful beyond words for your support.
 

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02/15/2014
by Donnie Brainard
India's good pal Sherri made a surprise visit. She flew in from Denver last night dressed like a doctor, her face hidden behind a surgical mask.
 
I'll let the video tell the rest of the story.
http://moomock.blogspot.com/2014/02/a-visit-from-good-doctor.html



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02/15/2014
by Donnie BrainardShare This Update!


02/11/2014
by Donnie Brainard
The past days have been bad for India and myself. She is having a lot of pain and our stay has been extended for a considerable time here in Boston.



I'm wanting my wife and children to come be with us because I believe it will be a huge boost for India's spirits if her siblings are running around her hospital room making a bunch of noise; bringing smiles to India's face.

India has been in the same hospital room for over 2 weeks and now will most likely double that; not including rehab.


India and Nikki
India and Marion
India and Abbie

India and Vikki


If anybody has any extra frequent flyer miles, I'd be grateful beyond words.

I'm humbled to make such a request but - here I am.

Thank you for your consideration.


 
https://www.youcaring.com/medical-fundraiser/she-doesn-t-deserve-this/114808




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02/11/2014
by Donnie Brainard
India and I started the day hopeful again despite the unthinkable just hours before.  We wake up each morning with hope despite a darkness most can't fathom that follows us like a shadow.  
 
I know this sounds incomprehensible, but "by the grace of God", most never experience what India and I do. 
 
Imagine holding your child's head pressed against yours as you sing, hum, or talk about beautiful times as your trying to give comfort to your "baby" while your child screams in pain; shaking.
 
All the while, the tears of your child mixes with yours; burning your eyelids. 
 
Then your child's saliva begins to drip into your mouth from their frantic screams and you can taste their fear and pain in a way most never do.
 
Think about having to feel your child's sweat from the pain that is so intense as it mixes with yours and rolls down your cheek and neck; saturating the clothing and bedding; being mistaken for urine by the nurses and doctors.
 
What about holding your child as she trembles and begs for help as the nurses and doctors are calling a "stat" situation because of a critical situation; with "your" child. Feeling the panic and fear while your child looks into your eyes asking for help over and over.
 
This has been our life before and has now been for the past two days.
 
This is our day today and many days before and nobody deserves this.

Any help would be greatly appreciated.
https://www.youcaring.com/medical-fundraiser/she-doesn-t-deserve-this/114808

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02/11/2014
by Donnie Brainard
 
Two weeks ago yesterday, Monday January 27th, 2014 - India had her hip/femur surgery at Harvard Boston Children's Hospital.
  

Yesterday morning, we took India off of her traction. Everything went well. India was making jokes with the nurses and talking nonstop about marrying Daniel.

A few hours later, I went to get India lunch. Just as I was getting back to the hospital a nurse calls me and says "not an emergency but that I should get back ASAP".


The minute I entered the room, India started sobbing and grabbed onto me asking for help; she was in a lot of pain. I tried to sooth her every way I could think of, including handing India a photo of her boyfriend "Daniel".  She put his picture against her lips, kissed it and then started crying again.
 
The nurses gave India pain meds. When that didn't work, they called a "stat" with the Orthopedic team. The Orthopedic team quickly put India back in traction and her pain eventually stopped. 
 
The doctor said they need to keep India in traction for another week.
 
India went to bed holding Daniels photo.


https://www.youcaring.com/medical-fundraiser/she-doesn-t-deserve-this/114808

 

 

 

 

 

 
 

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02/07/2014
by Donnie BrainardShare This Update!


02/06/2014
by Donnie Brainard
My Baby Girl had a rough day today.  She was pale and lethargic.
India will have her full review this coming Monday.  If all goes well, she'll have the "pins" that go through her entire knee to support the traction system removed on Wednesday. With this scenario, India and I will come home in +/- 10 days. In the event she needs to reman in tracton, then the "pins" will remain and we will e here for 2 more weeks.
I received the x-ray's today and surgical details today that show the work done on my daughter; hard to look at.
Here is a summary of what she had done during the surgery:
  • Adductor tenotomy.
  • Femoral head and resection.
  • Valgus intertrochanteric osteotomy.
  • Femoral transaction pin.
  • Low Dose XRT.
We are grateful for everybody and their help.  It is for a great cause.

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02/06/2014
by Donnie Brainard
My Baby Girl had a rough day today.  She was pale and lethargic.
India will have her full review this coming Monday.  If all goes well, she'll have the "pins" that go through her entire knee to support the traction system removed on Wednesday. With this scenario, India and I will come home in +/- 10 days. In the event she needs to reman in tracton, then the "pins" will remain and we will e here for 2 more weeks.
I received the x-ray's today and surgical details today that show the work done on my daughter; hard to look at.
Here is a summary of what she had done during the surgery:
  • Adductor tenotomy.
  • Femoral head and resection.
  • Valgus intertrochanteric osteotomy.
  • Femoral transaction pin.
  • Low Dose XRT.
We are grateful for everybody and their help.  It is for a great cause.

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02/05/2014
by Donnie Brainard
Today is post surgery "day 7".  The past 7 days have been very hard and we are wiped out.
 
India has been in a lot of pain. They are doing all they can to control it but nonethless, she's hurting. 
 
My little girl has also been battling a fever that hit 103 yesterday. We had to pack her body in ice, in an emergency effort to bring her temperature down; it was frightening. They believe it's a result of a "UTI". India is on a broad spectrum antibiotic to fight off this infection. This Infection has taken a huge toll on India and set back her recovery; she looks bad.
 
As of now, we will remain in the hospital for at least another week. After that, we will be transferred to a skilled care rehab facility here in Boston for a few more weeks.
 
India keeps asking me to put her in her wheelchair and take her to her boyfriend "Daniel". She says "please daddy, please".
 
<img src="https://lh4.googleusercontent.com/-ONuScpkUDLY/UurBq_mmD1I/AAAAAAAUJjQ/-lCeTa0SeeM/s640/blogger-image-42024738.jpg" alt="" border="0">
<img src="https://lh3.googleusercontent.com/-a1Lz0LPMBOE/UurBfBPQwGI/AAAAAAAUJjI/kaWaiLi-bwU/s640/blogger-image--2136585817.jpg" alt="" border="0">






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02/05/2014
by Donnie Brainard
My pal who flew in from Alaska to help me with India took me out to dinner tonight after the nurses told me I needed a break.
 
We ate and laughed and then ate more. I think we had a total of 7 courses.


I returned to the hospital feeling human again. It was a great break for me. And I returned with some yummy dinner for India. But when I entered her room I felt every ounce of energy leave my body with what I saw.
 
India was in so much pain that she couldn't call out for help so nobody knew as she lay there helpless experiencing a hurt I can't begin to imagine. I had to emergency call for help while I held her. India sobbed in my arms quietly saying "owie daddy help me please". 

We got her pain under control and I held her until she fell asleep.  I just can't leave her for any extended period again until she's recovered.



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02/02/2014
by Donnie Brainard
Erin Solari: Just back from Boston and I know Donnie Brainard will send an update when he can but the recovery and healing process is moment to moment and day to day and sometimes there is just no way to describe that day. And on top of that, being at the hospital around the clock just wears one out so badly that there is no energy for anything else. It is not my place to forward another's info but I will say that by observation the staff at Boston Children's Hospital are some of the best I have seen and all are working together to help India in every way possible.

Also Donnie gets almost zero breaks because he is the only one sometimes who can assess what India is asking for and often the moment he tries to step out briefly to quickly eat or grab clothes from the hotel... He will be instantly called back to the hospital. In a perfect world Donnie would have more support there with him and I know my cousin Allen is there now trying to help but this is a long process and thus if there are other family or friends out there who are able to provide support there or even at home that would surely help. I also realized that while he is there for these months he is not working and that can surely generate its own stresses and challenges. Plus he is away from his wife and other 3 children which I imagine is hard as well. Again this is just my observation and thoughts from my short time there and looking at all the parts of life affected by this delicate situation and trying time for all his family. This after many challenging years before this - I pray for all involved and hope that the clouds of such strain and grimness may clear for all.

I also want to acknowledge all the family members & friends who HAVE already been supporting and helping for many years now. My golly - I admire all parents and all it takes to do it well and how much a parent gives of themselves and then with a disabled child or more than one I can't even fathom how the parents do it so my deepest respect to all the parents and families in this position and the super abundance of love, persistence and patience they all have to muster daily. — with Erin Solari at Boston Children's Hospital.

 

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02/02/2014
by Donnie Brainard
Erin Solari: Just back from Boston and I know Donnie Brainard will send an update when he can but the recovery and healing process is moment to moment and day to day and sometimes there is just no way to describe that day. And on top of that, being at the hospital around the clock just wears one out so badly that there is no energy for anything else. It is not my place to forward another's info but I will say that by observation the staff at Boston Children's Hospital are some of the best I have seen and all are working together to help India in every way possible.

Also Donnie gets almost zero breaks because he is the only one sometimes who can assess what India is asking for and often the moment he tries to step out briefly to quickly eat or grab clothes from the hotel... He will be instantly called back to the hospital. In a perfect world Donnie would have more support there with him and I know my cousin Allen is there now trying to help but this is a long process and thus if there are other family or friends out there who are able to provide support there or even at home that would surely help. I also realized that while he is there for these months he is not working and that can surely generate its own stresses and challenges. Plus he is away from his wife and other 3 children which I imagine is hard as well. Again this is just my observation and thoughts from my short time there and looking at all the parts of life affected by this delicate situation and trying time for all his family. This after many challenging years before this - I pray for all involved and hope that the clouds of such strain and grimness may clear for all.

I also want to acknowledge all the family members & friends who HAVE already been supporting and helping for many years now. My golly - I admire all parents and all it takes to do it well and how much a parent gives of themselves and then with a disabled child or more than one I can't even fathom how the parents do it so my deepest respect to all the parents and families in this position and the super abundance of love, persistence and patience they all have to muster daily. — with Erin Solari at Boston Children's Hospital.

 

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01/30/2014
by Donnie Brainard
It's been another very long night. India is having quite a bit of pain.  Plus her anxiety level is through the roof.  India likes to sleep on her side but can't because of her traction. This frustrates her and she starts to cry, asking me to help. India has the beginning of a bed sore so she has to be constantly shifted which hurts. 
 
Yesterday evening, she spiked a fever and had to have ice packs placed around her body. Daddy was a little worried for awhile there. No fever since thank God.
 
Today, I'm going to try to feed her some sushi with extra wasabi (her favorite) followed by a milk shake and daddy/India screening of Willy Wonka.






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01/30/2014
by Donnie Brainard
India is out of surgery.
It was a marathon session that began at 6:00 am and ended 12 hours later. The doctor said that her femurs were so eroded that there was absolutely no cartilage left. He said it was pure bone on bone advanced arthritis and her pain had to have been excruciating. They didn't have to do a transfusion, her blood loss was minimal. 
India is in major traction and will be for weeks. They've placed large screws into her knees as the connection point for the traction; very intense looking.

Her pain is managed right now and she is resting.
 
Thank you all for your support, I'm grateful beyond words.
 

 

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01/30/2014
by Donnie Brainard
India is still in surgery.  The doctors are now working on her right hip.  We won't know more until 4:30 or 5:00. 

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01/30/2014
by Donnie Brainard
It's time, I need to wake India up so we can go to the hospital. She is going to be frightened and plead with me to let her go to school today to be with her boyfriend Daniel instead.
In a matter of hours I'll hold her as she asks for me to help her as the IV lines are painfully placed in her fragile veins by a group of strangers with blue masks looking down on her. 
My child will yet again be terrified and looking to me to rescue her. India will tightly hold onto my hand saying "daddy help, please".
I've not slept much tonight as I've been anticipating what is about to happen.
In fact, I sit here not able to wake her with my usual smile. I know the dangerous procedure she faces and the pain she will experience.
I want to just cradle her and make it ok.
Nobody deserves this.

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01/26/2014
by Donnie Brainard
Tomorrow is the day…
  
 
India and I have to be at Harvard Boston Children's Hospital at 5:00 am Monday morning; in almost 24 hours.
 
India has no hip sockets and her femurs are a disaster.  She will be receiving a partial McHale procedure with hip shunts. This will get rid of her arthritic hips. It's an intense surgery...
 
India has had a low dose radiation treatment and will again  have another tomorrow at the Dana-Farber Cancer Institute to help eliminate unwanted bone growth post surgery. 

India's surgery will take up to 8 hours. To reduce surgery time because of her medically fragile state, 2 surgeons will be operating; one on each hip. 

The Physicians will be utilizing a process called "Cell Saver" where they recycle India's blood that she loses to reduce risk to my child. 

Post surgery, India will be in skeletal traction for 2 weeks. She will then be sent to a rehab hospital here in Boston for several more weeks.

India is scared and so am I.

We still need help…



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01/19/2014
by Donnie Brainard
 
So I can't sleep.... I don't think India can either. I keep hearing her giggling in her bedroom.
 
I don’t know for sure what she's thinking but I'm pretty sure India’s excited about "Partying Like a Rock Star" on the airplane; we're going to trash the damn thing while we drink Cokes and eat ice cream with impunity.
 
Maybe India’s giggling because she’s thinking about Daddy and India hanging in a hotel, watching pay per view and eating room service like Eloise does!
 
And she just might be excited about having the hurt taken away. She knows they did it before and the result among many was my child being so fortunate to fall in love with Daniel.
Daddy is quite nervous however and I’d give my life for any of my children to not experience what India has.
 
So I’m going to cook some Juevos Rancheros and await my oldNavy friend to come and take us to the airport at 4:45 am.
 

Goodnight Moon….

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01/17/2014
by Donnie Brainard
 
I have a pal who is the "shit".  When we were younger, life was different for both of us. If you'd asked each of us what we'd thought we'd be doing in 2014, I can guarantee that neither of us would have painted a picture of what our lives are today.

My buddy was injured in a brutal parachuting accident and is now wheelchair bound. Life for him has been unimaginable.  However he's come through it all like a champ and inspires me in ways I'll never be able to convey.

Well, as I've been saying recently, I've realized that "family" has nothing to do with "blood"; it's about "love". It's been a bitter sweet lesson at 45 years of age and in my situation, harsh.

So my good friend who lives in Alaska contacted me tonight and after the conversation he left me speechless.  He is going to fly literally across the United States of America, from Alaska to Massachusetts to spend a week with me and India in Boston. You can imagine how difficult this is for him to get from his home to Anchorage, then all the way to Boston with the stops in between solo in his wheelchair.


in·teg·ri·ty
in'tegrite/
noun
  1. 1.
    the quality of being honest and having strong moral principles; moral uprightness.
    "he is known to be a man of integrity"
    synonyms:honestyprobityrectitudehonor, good character, principle(s), ethics,morals, righteousnessmoralityvirtuedecency,
    fairness,scrupulousness, sinceritytruthfulness, trustworthiness

    "I never doubted his integrity"


in·spir·ing
in'spiriNG/
adjective
  1. 1.
    having the effect of inspiring someone.
    "he was an inspiring teacher"


This is my friend Allen M. Tonkin III
We call him "3"
(And I'm still taller than him!)
 
 
So many beautiful people have stepped forward to help; family; life is beautiful.

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01/17/2014
by Donnie BrainardShare This Update!


01/17/2014
by Donnie Brainard
India and I leave day after tomorrow. I'm scared, I'm happy and I want my child to know life without chronic pain.  I'm looking forward to days like this one with India in the near future.



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01/13/2014
by Donnie Brainard

Our dates have been updated for India's hip surgery and recovery.

It looks like India and I will be in Boston for about a month. We didn't expect this long of a period away from home but whatever it takes we will do.


Vikki will be looking after Marion, Nikki and Abbie while we're away.

  • 1/19/14 - DEPART FROM ALBUQUERQUE TO BOSTON COMMERCIAL FLIGHT
  • 1/21/14 - 1:00 PM CCS - BOSTON
  • 1/22/14 - 8:00 AM PREOP ADMITTING - BOSTON
  • 1/22/14 - 10:00 AM RADIATION ONCOLOGY - BOSTON
  • 1/22/14 - 2:00 PM SURGICAL TEAM EXAM - BOSTON
  • 1/27/14 - SURGERY DATE - BOSTON
  • 1/27/14 - 2/3/14 HOSPITAL RECOVERY - BOSTON
  • 2/04/14 - 2/18/14 SKILLED NURSING FACILITY - BOSTON
  • 2/05/14 - PRIVATE MEDICAL TRANSPORT JET FROM BOSTON TO ALBUQUERQUE
We are grateful beyond words for the worldwide support for my beautiful daughter India and my family.

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01/11/2014
by Donnie Brainard
Today, there is a fundraiser for India. 
This event has been put together by an absolutely beautiful family member with the support of her incredible husband, children and students whom she dedicates herself to.
 
The gratitude I feel for this act of kindness isn't something I can properly put into words. 
 
Nobody deserves to experience what my daughter does. Some of the days and nights are indescribable.  So to have people show such acts of kindness when they have their own lives to live and could easily turn a blind eye to us is what I've come to believe life is all about.
 
The fundraiser is at the Walgreens on 528 and Southern in Rio Rancho.  It starts at 10:00 am.  There will be baked goodies in exchange for donations.
 
As India's "Daddy", I can tell you that you'll be helping a beautiful child who has a very damaged body and is need.
 
Detailed information about India's fundraising campaign can be found at https://www.youcaring.com/medical-fundraiser/she-doesn-t-deserve-this/114808
And if you happen to run into these to people tomorrow, please tell them that I love them.
 
 
 
 
 
 
 
 
 
 
 
 
 

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01/08/2014
by Donnie Brainard
I want to thank everybody again as I'm sure I will - over and over, for all the support for India and her upcoming surgery. This has been an emotional time for our family in so many ways.  Yet we keep getting up each morning after very rough days and nights and taking that first step.

Tonight is one of those rough times...

It's 1:00 am and India's called out in pain twice now; screamed. Vikki and I go and stretch, re position and comfort her. During India's first bout of pain this evening, I helped her relax after re positioning by telling the news that she's going to transition to the same high school as her boyfriend. She giggled with excitement and then asked if her boyfriend also has pain in his body.

During the second time India's pain woke her up and she yelled for help, it was heartbreaking.  

Vikki did what Vikki does best, she stretched and positioned India in a way that made her little broken body feel ok for the time-being. When Vikki left the room, my child wanted reassurance that she wasn't going to her biological mothers house. I held India, kissed her forehead and assured her that she wasn't going there tonight. India smiled, gave me a kiss and went to sleep.

This life we live is very confusing and I'd give mine for my child to not live in pain and fear.

Tomorrow she will wake up with a smile, ask about her boyfriend and best friend Kate.  And we'll  do all we can to make it a good day.

db




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01/07/2014
by Donnie BrainardShare This Update!


12/27/2013
by Donnie Brainard

I can't begin to express how grateful I am to everybody for caring about my child.

For me as “Daddy”, this has been an emotional experience. When I reached out for help, I didn’t expect the outpour from around the world. I’ve had complete strangers contribute.  Friends come forward and then “pass the hat” through their families and communities. People I’d not seen in years, some of which I hardly knew come out of nowhere with assistance. We even had an amazing woman from Lagos, Nigeria help and then coordinate additional assistance from the East Coast of the United States.

It’s my goal to contact everybody that I can directly to give my thanks.  But for today, I wanted to share this message you.

Donnie


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12/24/2013
by Donnie Brainard

A couple hours ago, on Christmas Eve of all days, we received the news from Harvard Boston Children's Hospital that India's pre-surgery and surgery dates have been locked in; it’s going to happen. 

To be given the gift of “hope” that my child will have her pain taken away is without a doubt the greatest gift possible.

db


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12/13/2013
by Donnie Brainard
Potentially great news later today...
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12/12/2013
by Donnie Brainard
Today has been a long day but for once in many years, not in a bad way.  

I'm too tired write about everything right now, I just want to curl up under the covers and sleep. But I do need to share one event out of the many that just happened.

The following is a text from an Angel - one of my daughters best friends that I received just after dinner:

"My sister volunteers at a homeless soup kitchen in Austin. She mentioned India's situation, and several of the homeless people gave my sister a dollar each"

The moment I read this text on my cell phone, I went into the other room and shared it with my wife. But something unexpected happened to me, I began to weep. I tend to cry now and then but this caught me off guard and was confusing. Not because I was embarrassed but at the moment, I couldn't process the intense emotions I was feeling. This was actually frightening.

Some time has passed and I think I have some idea of my unexpected reaction.

I've dismissed hundreds of homeless people in my life around the world without a thought as they've asked for money, work or food. This includes many times in Texas and even Austin.

I don't doubt that some of the homeless I've ignored, walked across the street to avoid or coldly said "no" to, had no business begging in the first place.

But how many of those homeless with their hand out who I shunned were living in fear and in need of help and had nowhere else to turn to?

Did they have children waiting nearby and were they disabled, cold or hungry?

And am I any different than the homeless in dire need as I'm reaching out for help this month for my daughters medical needs, quality of life or life itself?  

So tonight I learn that homeless people in Austin, Texas are giving money to help my daughter.  That is absolutely beautiful beyond words to me.  And it's horrifying at the same time as I've turned my back on that very same group without a second thought.

Imagine if one of those homeless that gave their last dollar to India tonight, a cold night, is one of my fellow humans that I ignored, went out of my way to avoid, or coldly said "no" to.

Also, I can't help but think about India's last 5 trips to the emergency room when not a single family member took the time to show up, nor help in that time of crisis.  Yet I blessed with homeless people who have never met my child are making an effort to help.

Thank you.





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12/11/2013
by Donnie Brainard
I want everybody who has reached out in anyway during this fundraiser for India to know just how grateful we are.

I never imagined seeing such an incredible response.  

I'm going to contact everybody that I can to say "thank you" in a more personal way when the dust settles.  But I felt it important to take a moment tonight to let you know you've done something very special for a kid who does her best every day regardless of her physical circumstances; just wants to laugh, love and smile.

Thank you.
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12/10/2013
by Donnie Brainard
Until 2011, India would take every single opportunity to dance. In 2011, her body was experiencing too much pain to do so many of the things she loves.
 
If all goes well, this month or next, she'll get this hip problem taken care of and be the next winner on "Dancing With The Stars".

Fun videos of India dancing: http://youtu.be/Xp_Upzvbdqw

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