Day 54 In Boston - Decompressing

India and I took the time today to just "chill".  Being a Saturday, not many people at Boston Children's.

After our outing, India had Lobster Bisque with extra hot sauce. Great end to a nice day.

Day 54 In Boston - We are headed home hopefully soon...

Yesterday was very long. We had a "team" meeting to outline what India needs.

The general consensus is to get India back home ASAP.  She is asking for her sisters and brother - Marion, Nikki and Abbie. And needless to say, her boyfriend Daniel.

The thought is if she can have more moral support, her spirits will improve and her body will follow.

We will come home soon if all goes well. It's going to be an intense process as India is very weak and requires a lot of assistance; way more than normal.

We are returning on a "Med-Flight" because of India's condition. There is no way she could do a commercial flight. India can't grasp the concept of a private flight yet. I've told her we are going to party like rock stars - watch Willy Wonka and eat Ice-Cream.

Once we get home, India will need enormous amounts of attention and TLC. It's not going to be easy. 

It's my plan to have India make an unnounced visit to school for an hour or so not long after we return; once she is strong enough.  India giggles when we talk about her surprise school visit. And of course she starts talking about her boyfriend Daniel and how she is going to marry him; she is in love.

India also had a series of new x-rays yesterday. Her hips are looking good, India's back however is a different story.

The x-rays were very hard to look at. India's spine is terribly twisted and getting worse. She is +/- 3% points from her scoliosis becoming a danger to her heart and lungs.

No set timeframe on how long until India has to return to Harvard Boston Children's to have rods placed along her spine. But it's safe to say the time will come quicker than anybody would like. It's going to be another intense surgery that is critical for my child and one I dread.

I told the doctor that we needed to buy as much time as possible so India could recover, become stronger, be a teenager and enjoy life; the doctor agreed.

I am however worried sick that when we return home, the "Dementor" will again refuse to use India's Orthotics and/or medications as she has done in the past. India can't afford anymore narcissistic shennagins with complete disregard for the children.

(she·nan·i·gans

SHəˈnanəgənz/

noun

informal

1. 1.

   secret or dishonest activity or maneuvering.)

   • 
     
     

Day 47 In Boston - Spa Day

India was treated to a "spa day" by the amazing Theresa. This incredible woman has shown a level if dedication that has made all the difference in the world for my child (and me).

Day 44 In Boston - She Pulled Out The Feeding Tube

So on day 44, about 1:30 am in the morning, India pulled out her NG Tube (Nasogastric intubation is a medical process involving the insertion of a plastic tube through the nose, past the throat, and down into the stomach.).

A few hours earlier, after the NG Tube was placed and India was ok, I left the hospital for a nap and shower. I was horribly sick and the break was much needed. 

When I returned, India was sleeping soundly. I settled into the "blue chair" next to her bed and tried to get some more rest. About 20 minutes later, a warning "beep" from one of her bedside machines sounded. The nurse came in, turnded the "bep" off and told me that India had pulled out the NG Tube; I had no idea it had even happened. 

This feeding tube had just been placed only hours before. As soon as it was inserted and nutrition flowing into her tummy, India was herself again; smiling.

I was told the "Resident" Physician wanted to wait and see how she was doing without the NG Tube that was inserted only hours before; I went numb.

The Resident Physician on the night shift had apparently made some assumptions and decided to see if it was time for India to come off her NG Tube.  I asked to talk to this Resident.

When the Resident Physician arrived I was told that India didn't want the NG Tube in anymore. My response was that she didn't want to eat oraly either - so which should we alow her to chose.

The Resident then said that that I shold consider a "G Tube" (Gastronomy Tube [also called a G-tube] is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's an hour surgery.); another surgery that we've worked for 15 years to avoid.

I was upset and panicked beyond words. India is having a difficult time recovering "as is" and another surgery was suggested...

So the next day, India's doctor came to check up her and he gave the order for her to get back on the NG Tube right away.  This was done and went well.  But we had to restain India's arm with a brace so she couldn't reach her nose and pull out the NG Tube again.  

This really upset her.  Imagine only having the use of one arm and all of a sudden it's placed in a device rendering it useless and stiff.  My poor daughter was pleading with me "help me daddy, please" while she cried and twisted in pure frustration; trying to free her arm.

India and I were up almost all night.  I tried to distract her as the NG Tube gave India the nurishment she needed, but I think at in part my child felt as if she'd lost the use of her one limb that worked. I can't imagine the despair she felt.

This photo is just before India went on the NG Tube.  She became so weak that she was a limp as a noodle from lack of nutrition.

Not long after the NG Tube was placed.

Day 43 In Boston - Feeding Tube

India just wouldn't eat for the past few days. So today the decision was made to put her on a feeding tube.

The placement went well, no X-rays were needed and she didn't experience any discomfort.

India had her 3 BEST (human & non clown) friends who work at Boston Children's Hospital at her side as always; NANCY, Lauren and Theresa.

I'm forever in the debt of these amazing and dedicated women. But my "chapter" about them must age like "fine wine". Or I at least need to add some fancier words with a Bostonian "accent" to pay them the respect they deserve. 

India is comfortable right now, watching Marry Poppins and looking at photos on her iPad.

And as you can see on the top photo. India is still wearing her pearls sent to her by Dorothy Vau Armijo McCoy; India LOVES them.

It's been a really rough road, much harder than I expected.  I hope India is back at school with her boyfriend and friends soon.

Day 42 In Boston - Angela & Jason

Angela and Jason took this photo of India today. They were so generous to drive up from their farm in Rhode Island and spend the day with India while I was stuck in bed with a bad cold.

This is the third time they've come to support us.

Day 39 In Boston - Rough Times

India's having a rough time. She has been in her hospital bed for 31 days. 

My days surround my beautiful baby girls sleep pattern. When she is medicated and falls asleep, I take a walk, bathe, sleep, or even watch TV. It's my only chance to to recharge.

Last night when I came back in the early morning hours, she cried out in pain and sobbed.

Words can't express the emotions...

Day 37 In Boston - A friend in need is a friend indeed; A friend with Chile is better...

A friend in need is a friend indeed; A friend with Chile is better... 

We have been in the hospital for a month now in Boston.

This past weekend several amazing people went very far out of their way to help us in such a beautiful way.

We were surprised with Monroe's chile from New Mexico; a couple blocks from where I grew up. And yummy chile dishes from local Bostonians.

I mixed these wonderful hot morsels with some fantastic stuff that our new friends from Rhode Island brought us. The result was a smile, a big smile in India's face, smacking of lips and a full belly.

Thank you...

The President’s Speech Tonight - Representative Joe Wilson 9-9-9

The President’s speech tonight was near and dear to my heart. President Obama could have been talking specifically about my life; it was eerie. When my daughter, India was an infant, she was injured at Presbyterian Hospital in Albuquerque; a doctors error. She was born normal but as a result of the doctor’s blunder, she ended up with cerebral palsy, a tri-pelagic. 

When we finally got India home and the dust began to settle, we found that we were over $130,000.00 in debt as a direct result of India's injury. We had no money to our name and had to borrow $5,000.00 from a dear friend to start my current company, Alameda Property Group, LLC. We lived day to day with the horrific fear of our daughter passing away or ending up in chronic pain as a result of our not being able to cover her necessary medical/physical needs. This worry was absolutely crushing to my spirit and yet, I continued to go to work every day, paid my insurance dues and still had this terrible cloud over my head. It's been a constant fight with the insurance companies to cover the absolute basic needs for my daughter. Yet I regularly pay her insurance premiums every month, year in and year out.

Up to this day, Wednesday September 9, 2009, I've had to pay $1,200 + a month in medical insurance premium plus an average of $7,000.00 additional dollars per month for medical/physical care that the insurance companies refuse to pay. This additional care keeps my daughter alive and pain free.
I'm incredibly fortunate that I can usually afford the additional coverage my daughter needs, not to mention the high monthly insurance premium. With the amount of love that I have in my heart for my children, I can't even imagine what it's like for families who aren't as fortunate as I am. I can't bring myself to think about what it must be like for parents who are helpless and must watch their children die or descend into a life of chronic pain and suffering.

When Representative Joe Wilson called our President a "liar" tonight, I was horrified at the insanity, irresponsibility and disrespect that this man displayed. We have a President in office that’s fighting to better the system. Both Democrats and Republicans alike have had decades within my lifetime to do so but yet the overall health care system has remained “status quo”. Here is a man who is willing to take on the immense challenge and yet he's yelled at, during a worldwide speech, by an elected official whose political party has virtually bankrupted the United States of America.

I'm proud as an American Veteran can be for President Obama. I only hope that those who viciously oppose his health care goal never have to personally experience what I've experienced. I hope that they can stop the nonsense, sit down and help come up with something that betters our system as a team.

I’m tired, tired, tired of the political rhetoric from those who don’t personally face the daily challenges of life that the average American experiences. Those privileged politicians who enjoy top end insurance benefits with low premiums. The very same, out of touch, people who don’t send their children off to wars they champion or honestly serve in the military they so quickly put into harm’s way. 

I wholeheartedly support my Presidents efforts and I’m proud of him beyond words.

Day 35 In Boston - Small Steps

Innie slept a lot last night.  This morning, she was visited by Bethoven the DOG who made her giggle.

I finally got India to eat 1/2 an egg (con mas caliente salsa) for lunch.

It's a beautiful day here in Boston so I'm going to try to get India outside for a few minutes.  I want her to have the fresh warm air hit her face and enjoy smells other than her hospital room and my farts. 

India has been confined to her hospital bed for almost a month now...

And the end result:

Day 34 In Boston - Not Doing Well Today

India isn't doing well, not sure why.

The Doctors are putting her back on IV fluids and an NG tube to try to get her over this hump.

India refuses to eat or drink. She isn't smiling and looks really bad.

India's pain is increasing to the point she falls asleep after each hurt attack from the exhaustion. 

We are trying to keep her spirits up and get India back on track.

db

Day 32 In Boston - Another Long Night

Not much sleep last night. India is having bouts of pain about every hour when her meds start to wear off.

Day 31 In Boston - Out Of Surgery - Painful

India is out of surgery and the ICU.  The first few hours were very painful for her; she is ok now. 

They removed the "pins" from her knees, x-rayed her spine and did bunch of blood tests.

The doctor is worried about the curvature of India's' spine and its impact on her heart, hips and lungs. The scoliosis is only 3 points away from being dangerous and requiring surgical intervention.  She will have to wear her torso brace 24/7 if possible to fend off a major surgery and more pain.

Day 31 In Boston - Post Surgery - In Surgery

India is in surgery now. As always, she was scared and wanted to go home.

Day 30 In Boston - Post Surgery - A Song Brought Her To Tears

Yesterday, two beautiful friends of my Buddhist Nun sister "Kelsang Dechok" who are complete strangers to India and I drove to Boston from Rhode Island. Angela and Jason came to meet India to give us some emotional support.

Well... they brought good will, a guitar and bracelet making material; the result was amazing.

Long story short, after a beautiful charm bracelet was made with the help of Angela and shortly thereafter being proudly worn by India (to this moment) - Jason sang songs.

I've never seen my child react the way she did today. 

India wept happy tears, smile on her face, as her cheeks regained color for the first time in weeks. I kneeled on the floor watching as my bed ridden daughter moved her head back and forth to the rhythm of Jason's touching tunes.

Angela and Jason took my India from her undeserved hospital bed today to a truly beautiful place in her mind; she was given the gift of respite. All of us who watched were deeply moved.

India has been confined 22 days to her mechanical bed with attached devices that flash and make various "beeps"; day in and day out.

India is awoken every hour by strangers who put fluids and pills in her mouth and arms.  The result is my daughter's spirit and personality being reduced to nothing more than blank stares and exhaustion at times.

However, today India again was blessed with something beautiful and at the hands of stangers.

And right now, she is in a rare and much needed deep sleep.

db

P.S: If you look at the lower photo, you'll see my "Baby Girl" is crying.