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.