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She Doesn't Deserve This

$17,827raised of $50,000 goal
35%

Organizer: Donnie Brainard Beneficiary: India Frances Brainard

Until 2008, my beautiful disabled child enjoyed so much that brought smiles to her face. Today the pain is quickly wiping all that out.

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Fundraiser Details

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













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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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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">

">


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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<img src="http://3.bp.blogspot.com/-Ic2A0kofHzc/U4kdSuXSSqI/AAAAAAAVHKQ/VIYF_FMJ9FQ/s1600/13U0FO.Em.56.jpeg" alt="" width="320" height="400" border="0">
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...
">


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.

Share This Update!
<img src="http://1.bp.blogspot.com/-SIFTjaoJUp8/U4aSP-QTQII/AAAAAAAVGE0/Bwf8H-bcYSo/s1600/blogger-image-1906505487.jpg" alt="" width="640" height="404" border="0">
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.
">


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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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
">


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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<img src="http://3.bp.blogspot.com/-tifS2HA6CyQ/U3EjssWNI5I/AAAAAAAU7v0/c6YjtVoE6ww/s1600/unnamed.jpg" alt="" width="480" height="640" border="0">
 
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.
 

 
">


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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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
<img src="https://lh6.googleusercontent.com/-SBQkmwAtmEY/U2mYJspWNHI/AAAAAAAU5vM/K7gxzlwlsY8/s640/blogger-image--1670469666.jpg" alt="" width="640" height="640" border="0">
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.


 
">


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...
<img src="https://lh4.googleusercontent.com/-7zltJ_EfA_U/U2EFT-9X3hI/AAAAAAAU10k/afqBXVqdtJ0/s640/blogger-image-385574069.jpg" alt="" border="0">
<img src="https://lh6.googleusercontent.com/-YHW2ifGg7Jk/U2EFZKkosiI/AAAAAAAU10s/UEJ8SSOeCyw/s640/blogger-image--120258547.jpg" alt="" border="0">
 
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.
<img src="https://lh4.googleusercontent.com/-3j4ZDaO6YaY/U2EFdyQzujI/AAAAAAAU100/rHa9HjjxX7o/s640/blogger-image-1704910318.jpg" alt="" border="0">


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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...
<img src="https://lh4.googleusercontent.com/-7zltJ_EfA_U/U2EFT-9X3hI/AAAAAAAU10k/afqBXVqdtJ0/s640/blogger-image-385574069.jpg" alt="" border="0">
<img src="https://lh6.googleusercontent.com/-YHW2ifGg7Jk/U2EFZKkosiI/AAAAAAAU10s/UEJ8SSOeCyw/s640/blogger-image--120258547.jpg" alt="" border="0">
 
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.
<img src="https://lh4.googleusercontent.com/-3j4ZDaO6YaY/U2EFdyQzujI/AAAAAAAU100/rHa9HjjxX7o/s640/blogger-image-1704910318.jpg" alt="" border="0">

">


04/27/2014
by Donnie BrainardShare This Update!
Even wearing a Spika Cast, India was still smiling.
 
<img src="http://3.bp.blogspot.com/-hSFvg15qsbo/U1zTqJxbl8I/AAAAAAAU08E/EyRUBRglXBc/s1600/6kMMNpu.jpg" alt="" width="640" height="640" border="0">
 
">


04/27/2014
by Donnie Brainard
 
    <img src="https://lh3.googleusercontent.com/-SF7H5IYa57Y/U1lpVcDs6zI/AAAAAAAUyyE/BgxvTGWPAqw/s640/blogger-image-1065744707.jpg" alt="" border="0">

<img src="https://lh6.googleusercontent.com/-eII2AsgneBk/U1lz9wxRaxI/AAAAAAAUy1k/-xEaka9T7f8/s640/blogger-image--1156019103.jpg" alt="" border="0">
<img src="https://lh5.googleusercontent.com/-LBi_A7o6Aqc/U1l0MFzTCYI/AAAAAAAUy18/taWiwFRq-W0/s640/blogger-image--886286239.jpg" alt="" border="0">
<img src="https://lh3.googleusercontent.com/-KlXgoyjR0L8/U1mn0a68mgI/AAAAAAAUy2Y/xSwG1lmGNWs/s640/blogger-image--943514531.jpg" alt="" border="0">
<img src="https://lh6.googleusercontent.com/-F2ALbDvhGoY/U1l0HQhzRRI/AAAAAAAUy10/ARx70L98Ng4/s640/blogger-image-1505090171.jpg" alt="" border="0">
<img src="https://lh3.googleusercontent.com/-Y0UnJ-AV4-w/U1lyRzj6AjI/AAAAAAAUyzo/tHp6MFiJRFQ/s640/blogger-image-2036509223.jpg" alt="" border="0">
<img src="https://lh3.googleusercontent.com/-CABAc6ZHwvo/U1lyNHe9SzI/AAAAAAAUyzg/mtclCe1wtEQ/s640/blogger-image--581419691.jpg" alt="" border="0">
<img src="https://lh5.googleusercontent.com/-E-hokxP0R2g/U1l0RRSCR_I/AAAAAAAUy2E/wYyNnqkFykQ/s640/blogger-image--1526868342.jpg" alt="" border="0">
<img src="https://lh3.googleusercontent.com/-OC2vloJtAkM/U1lz5fest3I/AAAAAAAUy1c/7dYiMATfCf8/s640/blogger-image-388089862.jpg" alt="" border="0">
<img src="https://lh3.googleusercontent.com/-OK2xJCLEw0U/U1lz0sbPkNI/AAAAAAAUy1U/Vbkc3vJHCII/s640/blogger-image--470152159.jpg" alt="" border="0">
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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://lh6.googleusercontent.com/-B114qY4RcMc/U1b6E0V8lvI/AAAAAAAUyqU/8M8qDAQKFlo/s640/blogger-image-577546909.jpg" alt="" border="0">
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Share This Update!
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://lh6.googleusercontent.com/-B114qY4RcMc/U1b6E0V8lvI/AAAAAAAUyqU/8M8qDAQKFlo/s640/blogger-image-577546909.jpg" alt="" border="0">
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<img src="http://4.bp.blogspot.com/-qeEMAqfXDSw/U1O5CjFbhwI/AAAAAAAUyao/53aRTbRqxqI/s1600/indiegogo.png" alt="" width="320" height="137" border="0">
">


04/22/2014
by Donnie Brainard
<img src="https://lh4.googleusercontent.com/-_0offRCzUPo/U1YSpfvAwTI/AAAAAAAUypc/AYRZuEAVPR4/s640/blogger-image-894795857.jpg" alt="" border="0">
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....

Share This Update!
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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....
">

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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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.
 
<img src="http://1.bp.blogspot.com/-gvdmHmeItAU/U0i5AwUku-I/AAAAAAAUxa0/9f0KiL2CYe8/s1600/blogger-image--1833636164.jpg" alt="" width="640" height="640" border="0">
 
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.
 
<img src="http://4.bp.blogspot.com/-Aclg38mLs4M/U0i47eL8EkI/AAAAAAAUxas/IDVbpGLPWm8/s1600/blogger-image-922308805.jpg" alt="" width="640" height="640" border="0">
 
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.
 
<img src="http://2.bp.blogspot.com/-M3Tajrn5Qss/U03OemR5gzI/AAAAAAAUxtI/e9bEhyIxIKs/s1600/blogger-image-1163735758.jpg" alt="" width="640" height="426" border="0">
 
 
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. 
<img src="http://3.bp.blogspot.com/-ylP8J-FsJk4/U0_PB_lguFI/AAAAAAAUxy8/UEIHXpMhfbg/s1600/GoldenPride05.jpg.gif" alt="" width="640" height="520" border="0">
 
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...
 
<img src="http://3.bp.blogspot.com/-2YAyQv2cvQc/U0ZR2QrNvOI/AAAAAAAUxZE/xdEeycfVmqw/s1600/blogger-image-352452115.jpg" alt="" width="640" height="360" border="0">

<img src="http://3.bp.blogspot.com/-etcwtOs_GfE/U0ZR6vimKZI/AAAAAAAUxZM/OzrOcNlzBDQ/s1600/blogger-image-253441091.jpg" alt="" width="640" height="358" border="0">
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!
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.
 
<img src="http://1.bp.blogspot.com/-gvdmHmeItAU/U0i5AwUku-I/AAAAAAAUxa0/9f0KiL2CYe8/s1600/blogger-image--1833636164.jpg" alt="" width="640" height="640" border="0">
 
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.
 
<img src="http://4.bp.blogspot.com/-Aclg38mLs4M/U0i47eL8EkI/AAAAAAAUxas/IDVbpGLPWm8/s1600/blogger-image-922308805.jpg" alt="" width="640" height="640" border="0">
 
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.
 
<img src="http://2.bp.blogspot.com/-M3Tajrn5Qss/U03OemR5gzI/AAAAAAAUxtI/e9bEhyIxIKs/s1600/blogger-image-1163735758.jpg" alt="" width="640" height="426" border="0">
 
 
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. 
<img src="http://3.bp.blogspot.com/-ylP8J-FsJk4/U0_PB_lguFI/AAAAAAAUxy8/UEIHXpMhfbg/s1600/GoldenPride05.jpg.gif" alt="" width="640" height="520" border="0">
 
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...
 
<img src="http://3.bp.blogspot.com/-2YAyQv2cvQc/U0ZR2QrNvOI/AAAAAAAUxZE/xdEeycfVmqw/s1600/blogger-image-352452115.jpg" alt="" width="640" height="360" border="0">

<img src="http://3.bp.blogspot.com/-etcwtOs_GfE/U0ZR6vimKZI/AAAAAAAUxZM/OzrOcNlzBDQ/s1600/blogger-image-253441091.jpg" alt="" width="640" height="358" border="0">
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.
 
 
 

 
 



 
 
 
">

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.
 
<img src="http://1.bp.blogspot.com/-gvdmHmeItAU/U0i5AwUku-I/AAAAAAAUxa0/9f0KiL2CYe8/s1600/blogger-image--1833636164.jpg" alt="" width="640" height="640" border="0">
 
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.
 
<img src="http://4.bp.blogspot.com/-Aclg38mLs4M/U0i47eL8EkI/AAAAAAAUxas/IDVbpGLPWm8/s1600/blogger-image-922308805.jpg" alt="" width="640" height="640" border="0">
 
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.
 
<img src="http://2.bp.blogspot.com/-M3Tajrn5Qss/U03OemR5gzI/AAAAAAAUxtI/e9bEhyIxIKs/s1600/blogger-image-1163735758.jpg" alt="" width="640" height="426" border="0">
 
 
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. 
<img src="http://3.bp.blogspot.com/-ylP8J-FsJk4/U0_PB_lguFI/AAAAAAAUxy8/UEIHXpMhfbg/s1600/GoldenPride05.jpg.gif" alt="" width="640" height="520" border="0">
 
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...
 
<img src="http://3.bp.blogspot.com/-2YAyQv2cvQc/U0ZR2QrNvOI/AAAAAAAUxZE/xdEeycfVmqw/s1600/blogger-image-352452115.jpg" alt="" width="640" height="360" border="0">

<img src="http://3.bp.blogspot.com/-etcwtOs_GfE/U0ZR6vimKZI/AAAAAAAUxZM/OzrOcNlzBDQ/s1600/blogger-image-253441091.jpg" alt="" width="640" height="358" border="0">
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!
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.
 
<img src="http://1.bp.blogspot.com/-gvdmHmeItAU/U0i5AwUku-I/AAAAAAAUxa0/9f0KiL2CYe8/s1600/blogger-image--1833636164.jpg" alt="" width="640" height="640" border="0">
 
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.
 
<img src="http://4.bp.blogspot.com/-Aclg38mLs4M/U0i47eL8EkI/AAAAAAAUxas/IDVbpGLPWm8/s1600/blogger-image-922308805.jpg" alt="" width="640" height="640" border="0">
 
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.
 
<img src="http://2.bp.blogspot.com/-M3Tajrn5Qss/U03OemR5gzI/AAAAAAAUxtI/e9bEhyIxIKs/s1600/blogger-image-1163735758.jpg" alt="" width="640" height="426" border="0">
 
 
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. 
<img src="http://3.bp.blogspot.com/-ylP8J-FsJk4/U0_PB_lguFI/AAAAAAAUxy8/UEIHXpMhfbg/s1600/GoldenPride05.jpg.gif" alt="" width="640" height="520" border="0">
 
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...
 
<img src="http://3.bp.blogspot.com/-2YAyQv2cvQc/U0ZR2QrNvOI/AAAAAAAUxZE/xdEeycfVmqw/s1600/blogger-image-352452115.jpg" alt="" width="640" height="360" border="0">

<img src="http://3.bp.blogspot.com/-etcwtOs_GfE/U0ZR6vimKZI/AAAAAAAUxZM/OzrOcNlzBDQ/s1600/blogger-image-253441091.jpg" alt="" width="640" height="358" border="0">
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.
 
 
 

 
 



 
 
 
">

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.
 
<img src="http://1.bp.blogspot.com/-gvdmHmeItAU/U0i5AwUku-I/AAAAAAAUxa0/9f0KiL2CYe8/s1600/blogger-image--1833636164.jpg" alt="" width="640" height="640" border="0">
 
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.
 
<img src="http://4.bp.blogspot.com/-Aclg38mLs4M/U0i47eL8EkI/AAAAAAAUxas/IDVbpGLPWm8/s1600/blogger-image-922308805.jpg" alt="" width="640" height="640" border="0">
 
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.
 
<img src="http://2.bp.blogspot.com/-M3Tajrn5Qss/U03OemR5gzI/AAAAAAAUxtI/e9bEhyIxIKs/s1600/blogger-image-1163735758.jpg" alt="" width="640" height="426" border="0">
 
 
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 f