Day 24 In Boston - Post Surgery - A Humble Request

The past days have been bad for India and myself. She is having a lot of pain and our stay has been extended for a considerable time here in Boston.

I'm wanting my wife and children to come be with us because I believe it will be a huge boost for India's spirits if her siblings are running around her hospital room making a bunch of noise; bringing smiles to India's face.

India has been in the same hospital room for over 2 weeks and now will most likely double that; not including rehab.

India and Nikki

India and Marion

India and Abbie

India and Vikki

If anybody has any extra frequent flyer miles, I'd be grateful beyond words.

I'm humbled to make such a request but - here I am.

Thank you for your consideration.

https://www.youcaring.com/medical-fundraiser/she-doesn-t-deserve-this/114808

Day 24 In Boston - Post Surgery - "2nd Attempt Off Of Traction"

India and I started the day hopeful again despite the unthinkable just hours before.  We wake up each morning with hope despite a darkness most can't fathom that follows us like a shadow.  

I know this sounds incomprehensible, but "by the grace of God", most never experience what India and I do. 

Imagine holding your child's head pressed against yours as you sing, hum, or talk about beautiful times as you're trying to give comfort to your "baby" while your child screams in pain; shaking.

All the while, the tears of your child mixes with yours; burning your eyelids. 

Then your child's saliva begins to drip into your mouth from their frantic screams and you can taste their fear and pain in a way most never do.

Think about having to feel your child's sweat from the pain that is so intense that it saturates the clothing and bedding; being mistaken for urine by the nurses and doctors.

What about holding your child as she or he trembles and begs for help as the nurses and doctors are calling a "stat" because of a critical situation; with "your" child. Feeling the panic and fear while your child looks into your eyes asking for help over and over.

This has been our life before and has now been for the past two days.

This is our day today and many days before and nobody deserves this.

Any help would be greatly appreciated.

https://www.youcaring.com/medical-fundraiser/she-doesn-t-deserve-this/114808

Day 24 In Boston - Post Surgery - "1st Attempt To Remove Traction"

Two weeks ago yesterday, Monday January 27th, 2014 - India had her hip/femur surgery at Harvard Boston Children's Hospital.

  

Yesterday morning, we took India off of her traction. Everything went well. India was making jokes with the nurses and talking nonstop about marrying Daniel.

A few hours later, I went to get India lunch. Just as I was getting back to the hospital a nurse calls me and says "not an emergency but that I should get back ASAP".

The minute I entered the room, India started sobbing and grabbed onto me asking for help; she was in a lot of pain. I tried to sooth her every way I could think of, including handing India a photo of her boyfriend "Daniel".  She put his picture against her lips, kissed it and then started crying again.

http://moomock.blogspot.com/2013/06/beautiful-love-may-24-2013.html

The nurses gave India pain meds. When that didn't work, they called a "stat" with the Orthopedic team. The Orthopedic team quickly put India back in traction and her pain eventually stopped. 

The doctor said they need to keep India in traction for another week.

India went to bed holding Daniels photo.

https://www.youcaring.com/medical-fundraiser/she-doesn-t-deserve-this/114808

Day 22 In Boston - The Day Started Good But Ended With Some Pain

India was a happy camper today until about 5:00; when the pain kicked in.

I'm grabbing India some good dinner, will get her super cozy and we will watch "Mamma Mia" for the 5th time today.

Tomorrow is going to be a rough and painful day. The doctors are going to try to remove her traction.

I'm keeping my fingers crossed that it goes smoothly.

We are grateful for any donations.

Day 22 In Boston - Friends

We are grateful for any assistance.

Day 20 In Boston - Bring On The Clowns!

So India and I were just finishing up her lunch when we had some unexpected guests; CLOWNS!

My little girl went nutz and laughed harder than I've seen her laugh in a long time....

Harvard Boston Children's Hospital is a great place.

The visit with the clowns was beautiful and made my little girl very sleepy.

We are grateful for any assistance.

Day 19 In Boston - Update and Operative Notes

India is doing well today and in great spirits. This is a huge relief after yesterday where she was pale and very lethargic. 

The doctor is going to do an evaluation this coming Monday to see if India can be taken off her traction. If she can, then next Wednesday the pins in her knees will be removed and physical therapy will begin. If she can't come off the traction then they'll keep it on for another week.

If it were up to India, she'd be off the traction in the next 5 minutes and we'd be headed home for some chili.

Below are the x-rays and Operative Notes that outline what she went through in her surgery:

Day 18 In Boston - My Walk From The Hotel To Harvard Boston Children's This Morning.

East Coast Snow Day

Day 17 In Boston - Post Surgery Update

Today is post surgery "day 7".  The past 7 days have been very hard and we are wiped out.

India has been in a lot of pain. They are doing all they can to control it but nonethless, she's hurting. 

My little girl has also been battling a fever that hit 103 yesterday. We had to pack her body in ice, in an emergency effort to bring her temperature down; it was frightening. They believe it's a result of a "UTI". India is on a broad spectrum antibiotic to fight off this infection. This Infection has taken a huge toll on India and set back her recovery; she looks bad.

As of now, we will remain in the hospital for at least another week. After that, we will be transferred to a skilled care rehab facility here in Boston for a few more weeks.

India keeps asking me to put her in her wheelchair and take her to her boyfriend "Daniel". She says "please daddy, please".

Day 16 In Boston - Needed Break - Gut Wrenching Return

My pal who flew in from Alaska to help me with India took me out to dinner tonight after the nurses told me I needed a break.

We went to the Union Oyster House and it was absolutely incredible food.

We ate and laughed and then ate more. I think we had a total of 7 courses.

I returned to the hospital feeling human again. It was a great break for me. And I returned with some yummy dinner for India. But when I entered her room I felt every ounce of energy leave my body with what I saw.

India was in so much pain that she couldn't call out for help so nobody knew as she lay there helpless experiencing a hurt I can't begin to imagine. I had to emergency call for help while I held her. India sobbed in my arms quietly saying "owie daddy help me please". 

We got her pain under control and I held her until she fell asleep.  I just can't leave her for any extended period again until she's recovered.

Day 15 In Boston - A Note Written By A Good Friend Who Came To Boston To Help And Witnessed The Intensity First Hand

Erin Solari and Allen M. Tonkin aka "III" September 1982 @ the "La Jolla Beach & Tennis Club".

Erin Solari: Just back from Boston and I know Donnie Brainard will send an update when he can but the recovery and healing process is moment to moment and day to day and sometimes there is just no way to describe that day. And on top of that, being at the hospital around the clock just wears one out so badly that there is no energy for anything else. It is not my place to forward another's info but I will say that by observation the staff at Boston Children's Hospital are some of the best I have seen and all are working together to help India in every way possible.

Also Donnie gets almost zero breaks because he is the only one sometimes who can assess what India is asking for and often the moment he tries to step out briefly to quickly eat or grab clothes from the hotel... He will be instantly called back to the hospital. In a perfect world Donnie would have more support there with him and I know my cousin Allen is there now trying to help but this is a long process and thus if there are other family or friends out there who are able to provide support there or even at home that would surely help. I also realized that while he is there for these months he is not working and that can surely generate its own stresses and challenges. Plus he is away from his wife and other 3 children which I imagine is hard as well. Again this is just my observation and thoughts from my short time there and looking at all the parts of life affected by this delicate situation and trying time for all his family. This after many challenging years before this - I pray for all involved and hope that the clouds of such strain and grimness may clear for all.

I also want to acknowledge all the family members & friends who HAVE already been supporting and helping for many years now. My golly - I admire all parents and all it takes to do it well and how much a parent gives of themselves and then with a disabled child or more than one I can't even fathom how the parents do it so my deepest respect to all the parents and families in this position and the super abundance of love, persistence and patience they all have to muster daily. — with Erin Solari at Boston Children's Hospital.

As a Post Script, Erin Solari is the girl who saved my life on October 3, 1982: http://moomock.blogspot.com/2010/05/global-grande.html