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. 

Day 9 In Boston - I DON'T WANT TO WAKE HER UP....

It's time, I need to wake India up so we can go to the hospital. She is going to be frightened and plead with me to let her go to school today to be with her boyfriend Daniel instead.

In a matter of hours I'll hold her as she asks for me to help her as the IV lines are painfully placed in her fragile veins by a group of strangers with blue masks looking down on her. 

My child will yet again be terrified and looking to me to rescue her. India will tightly hold onto my hand saying "daddy help, please".

I've not slept much tonight as I've been anticipating what is about to happen.

In fact, I sit here not able to wake her with my usual smile. I know the dangerous procedure she faces and the pain she will experience.

I want to just cradle her and make it ok.

Nobody deserves this.

Day 8 In Boston - LESS THAN 24 HOURS

Tomorrow is the day…

  

India and I have to be at Harvard Boston Children's Hospital tomorrow at 5:00 am Monday morning; in almost 24 hours.

India has no hip sockets and her femurs are a disaster.  She will be receiving a partial McHale procedure with hip shunts. This will get rid of her arthritic hips. It's an intense and dangerous surgery.

India has had a low dose radiation treatment last week and will again tomorrow at the Dana-Farber Cancer Institute to help eliminate unwanted bone growth post surgery. 

India's surgery will take up to 8 hours. To reduce surgery time because of her medically fragile state, 2 surgeons will be operating; one on each hip. 

The Physicians will be utilizing a process called "Cell Saver" where they recycle India's blood that she loses to reduce risk to my child. 

Post surgery, India will be in skeletal traction for 2 weeks. She will then be sent to a rehab hospital here in Boston for several more weeks.

India is scared and so am I. She keeps asking if she can go to school Monday to see her boyfriend Daniel.

We still need help…

Day 6 In Boston - Pushed It A Little Too Hard

Allen  M. "Moose-Knuckle" Tonkin AKA "III"

So my good friend Allen Tonkin "III" became very ill this week  after flying from Alaska to Boston to help me with India. He is now in the Beth Israel Medical Center for an undetermined timeframe.

Allen was supposed to fly back to Anchorage, Alaska last Friday to host a fundraiser for his film "An Adaptive Backcountry Project".  This after helping me for the past week with India here in Boston.

Allen is in GREAT hands and has a cute nurse which I'm sure he doesn't mind.  

The view from his room looks right down onto our hotel and Harvard Boston Children's Hospital. I do believe I can "moon" him from my hotel room (yes I've tried).

Allen M. Tonkin "III" is stuck here in Boston with India and myself for awhile and I'm "OK" with it. Not only does he get to have the best medical care in the United States but he also gets to continue to bring big smiles to India as he did the other night (long story, involves Allen almost throwing up and India laughing until she turned blue).

I'm grateful beyond words for Allen and all the other people who have stepped up to help us during this painful time.

db

Day 6 In Boston - Update

This week after a very long trip, Indias body not being kind to her and not enough rest for either of us; we've been given no break - except from an old pal (http://moomock.blogspot.com/2014/01/a-friend-indeed.html).

We also happened to be in Boston during a very, very cold weather system where the temperature in this area hit below "zero".

I've had a lot of paperwork to fill out, enough to level a forest. And dozens of calls, texts, im's and emails to respond to that I literally can't find the time for.

To make matters worse, the Dementor has shown absolutely no support in anyway. And in fact, has been on the attack and will NOT stop.  

If you recall, the Dementor attempted to block India's last procedure here at Harvard Boston Children's Hospital, a procedure that changed India's life in the most beautiful ways. 

I realized as I wrote this post that the Dementor has yet to ask how India is doing. I guess Dementors are just terrible narcissists without concern. 

("Dementors are among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness out of the air around them... Get too near a Dementor and every good feeling, every happy memory will be sucked out of you. If it can, the Dementor will feed on you long enough to reduce you to something like itself...soulless and evil. You will be left with nothing but the worst experiences of your life.") —Remus Lupin to Harry Potter^[src]

So to move on, in the past few days, India has had blood tests, physical exams, detailed questions - over and over. India has also endured oncology radiation at the "Dana Farber Cancer Institute" (http://www.dana-farber.org/mobile/default.aspx) to ensure no rouge bone growths after surgery.

I’m worried about the upcoming surgery but also very hopeful. If everything turns out the way the doctors say it will, India will be pretty comfortable after she heals from this procedure.

And the goal of the medical team is for India to be able to have the ability to "dance", "ski" and enjoy life again.

Vikki and I being India's parents who get up every single morning when the sun rises to stretch her. And do the same after the day is done and India is ready for bed proudly shoulder this honor.

We find ourselves worn out in every way imaginable; beaten down if you may. But we would not for a moment do anything other than what must be done.  These are our shoes and we wear them with love and dedication.

India, Marion, Nikki, Abbie, Gonad the Cat and Carwash the Pigeon are in good hands and loved.

And Monday morning, India is going to receive the best help possible in the world for her condition. 

"Donnie"

P.S. We are still in serious need.  This ranges from moral and spiritual support to financial assistance.