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.