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

Day 12 In Boston - Post Surgery

India was experiencing a lot of pain this morning.  We increased her pain meds and it made a huge difference.

Part of what is hurting her is the need to regularly shift India to avoid bed sores.

Day 11 In Boston - Traction

It's been another very long night. India is having quite a bit of pain.  Plus her anxiety level is through the roof.  India likes to sleep on her side but can't because of her traction. This frustrates her and she starts to cry, asking me to help. India has the beginning of a bed sore so she has to be constantly shifted which hurts. 

Yesterday evening, she spiked a fever and had to have ice packs placed around her body. Daddy was a little worried for awhile there. No fever since thank God.

Today, I'm going to try to feed her some sushi with extra wasabi (her favorite) followed by a milk shake and daddy/India screening of Willy Wonka.

Day 9 In Boston - Out Of Surgery

India is out of surgery.

It was a marathon session that began at 6:00 am and ended 12 hours later. The doctor said that her femurs were so eroded that there was absolutely no cartilage left. He said it was pure bone on bone advanced arthritis and her pain had to have been excruciating. They didn't have to do a transfusion, her blood loss was minimal. 

India is in major traction and will be for weeks. They've placed large screws into her knees as the connection point for the traction; very intense looking.

Her pain is managed right now and she is resting.

Thank you all for your support, I'm grateful beyond words.

Day 9 In Boston - Still In Surgery

India is still in surgery.  The doctors are now working on her right hip.  We won't know more until 4:30 or 5:00.