Day 122 - In Hospitals 2014, Our Year To Date In Pictures

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 66 - UNM Hospital, Long Night And Good Day

Last night was very long and India didn't sleep much. You can see how wiped out she was this morning in the above photo. She had a combination of pain and stomach upset. We had to do a lot of stretching and cautious feeding throughout the night.

India pulled a tear-jerker this afternoon. Her grandmother was here, they were having some fun and during a moment of silence, India looked at grandma and said "I love you". It was really touching.

Marion and I cooked up some sausages on the grill for dinner and then walked over to the park to meet the rest of the family. We had a blast, I really needed this time with the kids.

As usual, after the fun was done and the sun had set, I returned to the hospital to be with India.  

I hope tonight is a good night.

Day 42 - UNM Hospital, Where Did You Go Harvard Boston Children's Hospital?!?!

After "42 days" at the University of New Mexico Children's Hospital, I was compelled to write the following email to the Physicians who performed my daughters surgery back at Harvard Boston Children's Hospital.

The following email was written not only because of India's 42 days at the University of New Mexico Children's Hospital. It was also written because of her preceding 57 days at Harvard Boston Children's Hospital.  

As of the moment I write this, my child has been in hospital beds between Harvard Boston Children's Hospital and the University of New Mexico Children's Hospital - 99 days out of 129 in 2014. 

We were told by the "Attending" Harvard Boston Children's Hospital Physician who performed my child's surgery that we would be in Boston for 21 days (7 at Harvard Boston Children's Hospital and 14 at Spaulding Rehabilitation) then would come home and resume our lives.

I'm not naive, I understand that complications or the unexpected happen post surgery. But the difference between the 21 days and where we are actually at today, is 78 additional days in hospital beds. This doesn't include the 10 painful days my child spent at home without most services promised by Harvard Boston Children's Hospital upon arrival.

And an important note is that when we left Harvard Boston Children's Hospital with great hesitation and protest, my concerns as "Daddy" were ignored. We were being "passed on" and it was very frightening. 

During our med-flight from Boston to Albuquerque, my child was in so much pain that at one point Morphine was administered to help her. However in the discharge papers (or their kin) noted that India was "pain free". There was no truth to this statement and the disconnect by whoever wrote this was frightening.

So in my position as a Daddy with a fragile child who is one of my best friends, I'm put in an exhausting and impossible position that only she and I will regret and feel when the day is over. I'm having to forgive out of fear of causing issue and angering the powers that be in the medical community. I reluctantly let go as I watch and advocate for my child when I'm witness to very unfair and selfish acts by the same medical community that the masses are pressed to trust without question. 

And this takes place with Physicians who can at times take great pride in their surgeries and diagnosis despite the ultimate impact on my child's well being. 

So my India isn't recovering well. India is spending every day in a hospital bed with minimal intervention and if it weren't for my advocating (kicking and screaming), she'd be in big trouble here in New Mexico.

And as you'll see in my letter below, there is so much more involved.

I'm sure that my letter will be picked apart and justifications will be inserted. But the bottom line is that my daughter whom I paid a fortune to ensure was placed under the wing of the best facility in the world is now being shunned by the same facility. 

My letter to Harvard Boston Children's Hospital on May 8th, 2014:

"Dr. XXXX,

I'm writing you to express some serious concerns regarding my daughter India.

We've been in a "holding pattern" here at University of New Mexico Children's Hospital for over a month now. We've been in hospitals (BCH & UNMCH) for almost 100 days this year alone.

I want you to please take my daughter back to BCH now; no more delay.

The level of services and care at BCH is night and day difference from what we have in New Mexico.  I've spent a fortune to be at your hospital and have you care for my daughter. I've gone to these lengths because you and your hospital are the best at what you do.

Right now, the main reason for my daughter to not be taken back to BCH is because BCH wants India to have her G-Tube placed here in New Mexico first. I don't agree that this is the best plan whatsoever. In fact I'd say this could have a terribly negative impact on my child.

Each procedure India has sets her back because of her fragility. India is still experiencing intense pain, 102 days since her procedure at your facility in her left hip. Add a G-Tube procedure and recovery on top of her existing hip surgery recovery and my child could be stuck in New Mexico for a long time, receiving services that pale in comparison to BCH.

And keep in mind that during this time, I will be doing all I can to ensure India's Scoliosis is kept in check. This is a daunting task "as is" and as you know. 

So if we insert a G-Tube in New Mexico we will have to get India a new Torso Brace. ALL of her Torso Braces come from Boston and literally take months from start to finish. If there is a wrong measurement during this time, it has to be modified here which takes weeks or sent back to Boston. All the while, India's Scoliosis gets worse. 

Then when we insert the Baclofen Pump which at this point is to take place at BCH, the brace has to be modified or replaced again, in Boston.

Then there is the CP Clinic you wanted us to come to and the post surgery exam; in Boston.

And based on our last conversation related to India's spine, you wanted to take a look at her Scoliosis later this year; in Boston.

There is more but I think I've made my case to get my child back to Boston Children's Hospital now to take care of as much as possible in one trip and take care of these things now as best we can under one roof.

This doesn't include any potential rehab that was always discussed as taking place in Boston.

Please help me with this.  I no longer want to wait days much less a week to get back to BCH. UNMCH is on-board, insurance companies are on-board, I'm on-board as is my family. My phone number is below and I'm available 24/7 to talk. 

On a side note, have you received the newest series of x-rays for India via FedEx that were sent several days ago?

Thank you in advance for your time."

Nobody ever replied to me.

A week later, I was notified through UNM Hospital that India would be "allowed" to return to Harvard Boston Children's Hospital when she hit a "target weight". What this "target weight" has to do with the price of tea in China, I'll never understand. But regardless, I'm disgusted with what has taken place. 

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 59 - UNM Hospital, Could Have Done Without Today

The day is coming to an end and it's a day I'm looking forward to it being in my rear view mirror.

Not long after India's 3rd bout of pain this morning was brought under control and just after the sun was rising, we were taken down to get India a series of x-ray's on her hips and legs. This was a bad experience because I had to lift India out of her bed and onto the x-ray table; it hurt her. 

When we got back in the room and after India was settled in, I felt a huge sense of relief because I could finally go to bed. India was asleep so I curled up drifted off. :30 minutes later India was calling me to adjust her. When I placed my hands under her body to shift her from one side to another, I found a pool of liquid. India's GTube had popped and her stomach had emptied into her bed.

We spent the next :45 minutes cleaning her up and getting her comfortable again.

When India was back to sleep, I quickly did the same. This time, I think I was able to sleep for about 1.5 hours when India called for me. I went over and asked her what she needed. She said "owie Daddy", so I started to stretch her legs. When I was done, I could see she didn't look right. I started rubbing her back when she began to vomit profusely. 

We spent the next :45 minutes cleaning her up and getting her comfortable again.

The doctors decided to have a mobile x-ray of her stomach done to try and find out what was going on. When the x-ray was finished and the results returned, India became sick again. This time I decided to give her a long bath. 

All was quiet until 9:00 PM when the pain kicked in again. It's 11:00 PM now and the hurt is managed and India is asleep.

Good Night Moon.

Day 59 - UNM Hospital, Pain Hit A 3rd Time Tonight

India's pain hit again for a 3rd time tonight and this was bout was the worst yet. They had to put in an IV line so they could administer heavier medications to get India's pain under control. 

I don't think I need to detail how awful this was for India and frightening for me.

Day 59 - UNM Hospital, It Happened Again Tonight The Terrible Pain

India's had a second and even harsher bout of pain tonight.  The first one was bad, the second one ended with India vomiting. She's not in pain right now, but I'm not going to hold my breath.

During this last bout of pain, India was holding onto me, tears going down her cheeks pleading with me to help her in-between screams. I stood there helpless as I tried to calmly talk to her, rubbing her head and kissing her face.

The Doctors will do some imaging of her hips first thing in the morning to try to figure out what's going on.

I'm beginning to believe that the definition of hell is the place a parent who loves their child finds themselves as they helplessly watch them in indescribable pain, begging the parent for relief.