Day 52 In Boston - Our Days So Far In Photos

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.