Day 69 - UNM Hospital, A Rough Night Again...

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.

Day 68 - UNM Hospital, Good Night For India, Marion Daddy Day!!!!

So India had a good night last night and was a happy camper when she woke up this morning. I had to position her ever 45 minutes during the night but there wasn't the normal bad pain. She and I actually slept pretty well all things considered.

I decided when I got up that I should take advantage of India doing well and spend some time with Marion. I scooped her up and took Marion down to the train depot. We hopped on a train to Santa Fe and had an absolutely amazing day.

We walked from gallery to gallery, people watched at the Plaza, laughed and talked. 

Marion and Daddy at the Albuquerque Train Station

Marion on the Train

Almost to Santa Fe

Lunch at La Fonda

A Painting By An Old Friend (David Rothermel) Who Marion And I Visited Today.

Waiting For Our Train Home

Day 115 - In Hospitals 2014 - $638,965.72 Base Medical Costs To Date

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...

Day 65 - UNM Hospital, Helicopter PTSD

On April 10th of this year, a helicopter crashed into the roof of our hospital; not far from our room.  

So I have to admit, when I see helicopters approaching to land directly above our room day and night, it makes me a bit nervous.

Day 64 - UNM Hospital, We Might Have A Problem

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.

Day 10 - UNM Hospital, ABC News

Day 6, 7, 8 - UNM Hospital, Update

The last 3 days have had some beautiful moments.

India had a suprise visit from her boyfriends mother. Daniels mother came to the hospital to let India know that daniel is going to come visit her this coming week.  India couldn't stop smiling as she stared out the window thinking about her love.

India's teachers Mrs. Lydia and Mr. Stuart dropped in to see their good friend. When they came into the room, India couldn't believe what she was seeing was real.

My dear friend Ray made the 600 mile drive to come support me and my family. I can't begin to say just how much his being here helped us. 

Day 5 - UNM Hospital - Pretty Good Day

India slept a whole lot today. We aren't sure if it's from her new meds or if it's from exhaustion brought on by the horrible pain she's been experiencing. 

She had another IV line fail, causing her arm to swell up with fluids. It's the 6th line to go bad in 4 days and this one was very painful. You can see in the photos below that India is holding her arm tightly.

India's weight is a huge concern, she is hovering around 55 pounds at 15 years of age. I put out a post on Facebook asking family and friends to bring food to the hospital so I could fatten India up. My little girl just isn't very interested in hospital food. And to be honest, we were both lonely and wanted some company.

I guess the past year has taken it's toll on me. I was told tonight that I was looking "chunky" by my old pal Barbara from Garcias on Central and my friend "Heidi" aka "1 of 9" said that I was looking old...

I'm hoping for another good day tomorrow, we deserve it.

Our view just before sunrise.

India trying to work the pain out of her arm after the IV failed.

India's swollen arm from the IV failing.

I wonder if this is how India sees her shadow.

Crazy Buddhist sister having dinner with India.