Friday, May 30, 2014

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 BCHUNMCH 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.

Sunday, May 25, 2014

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. 

Day 59 - UNM Hospital, The Pain Broke Through Again

Not long after India fell asleep tonight, she began to have discomfort. This isn't unusual and one of the reasons I stay with her at night. What usually happens is that she'll wake up, ask me to stretch her legs, put on and off her Buxton Traction and re-position her. Anyone of these things will take place about every hour of the night. This usually manages her pain pretty well.

However, yesterday and this evening I noticed that she was having more pain than usual. And about 45 minutes ago, her pain broke through unlike anything I've seen in a long time; all in a matter of seconds. I again found myself calling for nurses as India screamed from the hurt while I tried to comfort her. 

After the pain was somewhat under control, India asked me to lie down and snuggle with her. I did this until she fell asleep. I'm sitting next to India now, my ears are ringing from her screaming. I'm praying there won't be more hurt, that she can sleep, that soon she won't remember what it's like to live like this. 

And while I'm sitting next to her right now, I'm listening to India make an occasional groan in her sleep from the pain that's still lingering in her fragile body.

Saturday, May 24, 2014

Day 58 - UNM Hospital, The Girl Wants To Dance!

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...

YMCA Dance Tonight

YMCA Dance A Few Years Ago

India's Dance Compilation

Day 97 In Hospitals Year 2014 - Marion Time, May 16th

This year is taking its toll on Marion, we don't get to spend much time together. 10 days ago, I took her to Colorado to have some one-on-one time and it was AWESOME.  So this weekend, I took her up to Colorado again.

We had a lot of fires in the fireplace, ate some great food, fed the birds and squirrels and I began to teach her to drive.

I love this kid.

Thursday, May 15, 2014

Wednesday, May 14, 2014

Day 47 - UNM Hospital, Out Of Surgery

Day 47 UNM Hospital (116 Days Total This Year) - Another Surgery

India had another painful night. We had to give her Oxy again. This isn't an easy decision on many levels. 

This morning, when she woke up, India wanted me to hold her; I did. When the nurses came in to take her to the surgery ward, she started trembling.

Tuesday, May 13, 2014

Day 46 - UNM Hospital, Surgery In The Morning

I'm sitting next to India as she sleeps. 

Tomorrow she has surgery. I'm so scared  for my little girl. 

She keeps saying "no" in her sleep, over and over. 

Nobody else is here...

She just woke up screaming. The nurses are trying to help her.

Monday, May 12, 2014

Day 45 - UNM Hospital, Surgery Update

India's surgery has been postponed until Wednesday May 14th @ 8:30 AM.

Day 45 - UNM Hospital, Surgery Tomorrow

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.

Sunday, May 11, 2014

Silly Little Boys and Their Ferrari's

Today is Mother's Day, a very emotional day for me.

As has been the case for almost every day this year, I've been in the hospital helping India.

Today India spent time with her mother. They made the rounds around the hospital and when India was returned to me, she was tired, weepy and sore. I stretched and comforted her until she fell asleep. Needless to say, I was tired and emotional too. It's hard for us to be in the damn hospital every day for hours on end. We both want to be out of there, live life, have fun and feel human.

So after India finally went to sleep, I decided to make the 5 minute drive home so I could cook a meal and maybe sleep a bit.

I pulled out onto the main boulevard - Lomas Boulevard and found myself not speeding up fast enough for a red Ferrari that quickly raced up behind me as if they were going to run me over; I found this funny. You see, I'm driving a 2006 Chevrolet Suburban 4 Wheel Drive, complete off road package and aftermarket Magna Supercharger; it's a "big" and powerful vehicle.

This Ferrari driver and his friend came within a couple inches of my rear bumper, then quickly veered to the next lane, cutting off a car, a person who I'd shared the elevator ride from the "Oncology Unit" with and who looked as exhausted as me; we had both pulled out of the hospital at the same time.

The "Ferrari" raced up to the passenger side of my vehicle; neither driver or passenger having the balls to look at me. They did however make sure that everybody in eyesight could see their Breitling watches, "UFC" shirts to confirm that they were "tough", and ridiculous sunglasses to ensure everybody knew that they were related in some way to the Kardashians.

So there I am at a stop light in my beloved Chevy Suburban with huge dents and 200,000 miles on the engine. I'm next to 2 absolute and complete shitbags who have cut me and another exhausted parent off with complete disregard. And I decided to do something quite satisfying that made me giggle like a little girl until I had tears in my eyes.

I turned my wheel to the right and started inching my dented, dirty and worn out vehicle towards the boxed in Ferrari. The minute I did this, I could see the drivers in the other cars smile with complete satisfaction and in one case, they put their cars transmission in "park"; the Ferrari fools were boxed in.

At first the Ferrari fools gave me a quick beep with the silly high pitched horn of their Italian car; silly boys thought I wasn't paying attention. But little did they know that there was a method to my meyhem. I decided to jerk my vehicle closer and closer to them with every "beep" of their horn.

These two Breitling watch wearing, UFC wannabees, who wanted nothing more than to be associated with the Kardashians - SHIT THEIR PANTS, with every advance I made. It was a glorious "payback" moment to two entitled and arrogant boys.

Needless to say, I didn't so much as encroach into their lane and the moment they could, they fled without any damage other than to their fragile egos.  But as the Ferrari fools sped off, the other parent from the hospital drove by me laughing and waved at me with a huge smile.

We both were given a moment we needed.

Mothers Day Coffee!

Abbie Jumping With Excitement For Mothers Day!

Saturday, May 10, 2014

Day 43 - UNM Hospital, A Difficult Request #2

So over 24 hours ago, my child's "traction" weight broke. This traction helps control her pain.

Despite many calls for help to replace the weights, nobody has shown up.

It's 5:45 PM and I've had to resort to adding bottles of liquids to my personal computer bag to modify the weight to suit my daughters traction needs.

Day 43 - UNM Hospital, A Difficult Request?

We are still here at University of New Mexico Children's Hospital after 43 days. 

India's "traction" water weight broke yesterday afternoon. It's now 4:45 am (the next day) and the hospital still hasn't replaced it with another water weight OR simple sand bags. So India and I have resorted to filling my computer bag with about 12 pounds of weight to make due and help her with her pain.

1:30 PM Update...

Next Day Update:

Thursday, May 8, 2014

Day 116 - In Hospitals 2014 - Marion, The Answer is "No".

This is my beautiful daughter Marion and I love her with all my heart.

This past year I've had to hyperfocus on Marion's sister India because of India's physical condition. This has meant that I've not been able to spend as much one-on-one time with Marion as both of us would have liked. But I've tried to fill the gap with healthy and productive activities. 

I've managed to get Marion up to Colorado 6 times with friends and family. She's gone to Park City Utah for a ski-holiday with her best friend during the Christmas break. And there has been much more.

Unfortunately, there have been a few opportunities that overlapped into custody timeframes that I have no say in and as a result these opportunities were blocked. 

One of these opportunities was earlier this year when I tried to fly Marion to Boston to spend time with both myself and her sister India. India wasn't doing well and had been in the hospital for a very long time. A visit from Marion would have been an incredible morale booster for everybody. A good friend knew that I was trying to get Marion to Boston and offered to pay for her plane ticket. But because of timeframes, a portion of Marion's Boston trip would have to have been during a custody period that wasn't mine and I had no say in. When I reached out for permission, the response was a "no" because of school. When I offered to contact each teacher and get all assignments so no schoolwork would be incomplete, the answer was still a "no".

The other major opportunity for Marion was presented not long ago. Marion was invited to accompany her best friend to Europe for 2 weeks. They were to go to Finland and Germany. Marion was really excited when she heard the news and I was really happy for her. Not many kids get to fly from New Mexico to Europe with their best friend for an all expense paid summer holiday. As with the Boston trip, this holiday would overlap into a custody period that wasn't mine so I'd have to get permission. After multiple attempts to get an answer, I received an email with one word, "no". There was no explanation, no rationale, nothing but a "no".

Needless to say, my heart breaks for Marion.