Yakini's update from Boston - May 11, 2010

Hello everybody,

Many of you followed our story during the long weeks that Coffy spent in Haiti. I would like to share with you some of the occurrences of the past month and update you about our current state.

As Coffy's mother arrived to the hospital in Boston, the doctors first of all did an assessment of her hip. They found that her leg was full of infection, which means that she could not have the hip replacement until the infection was gone.
She went through a preliminary surgery in which the surgeon put a spacer in her leg, filled with antibiotics, to hold and prepare the area for a new hip.
At that stage they had to "stretch the bone" - I don't know how you stretch a bone - but she was in excruciating pain, and they told her to anticipate that. She was in the ICU for 3 days after that surgery.
The next surgery was the actual hip replacement.
The operation was successful but when she was in recovery, she felt once again excruciating pain. They did an x-ray right away, and discovered that there was a complication. As part of the hip replacement operation, since her bones are very thin, the surgeons use cement to "glue" the hip in. Unfortunately the cement spilled over into her knee joints. So even though the hip replacement was successful, an hour after the surgery they had to go back and do another surgery and open her back up and pull out all the excess cement from her knee. Her blood pressure was hard to maintain, and she was put back in the ICU.

In the meanwhile, Coffy's dad was supposed to have both hernia and prostate surgery. However, he "failed" the preliminary "stress test": the doctors realized that there's something wrong with his heart. They discovered that he had 99% blockage in one artery. He was literally undergoing a heart attack when he started experiencing stress. He was taken straight out to the ER, where he was put on an EKG machine and they immediately caught it and put in a stent in his chest. They said, "we caught it right in time". He can't have his surgery until that heals, which is 40 days.

By now, Coffy's mom left the hospital and went to an orthopedic recovery rehab center.

Now this phase of the recovery is something that we didn't expect.
We thought Coffy would go over to Haiti, see if they're alive; if they're alive, take care of them, bring them here if he could, get their medical needs met.

But there's a new factor: the mental state. And that is one of the most difficult pieces in this puzzle.
Her spirit literally has been broken. Right now the diagnosis is that she's suffering from post traumatic stress disorder as well as delirium, and it's pretty severe. Sometimes she knows where she is, sometimes she doesn't. She can't disassociate herself from pain. If you just walk past her leg or if you just touch it, she screams. It's a combination of her being in pain with also thinking that she should be in pain.
Her therapist calls it anticipatory anxiety. It brings her blood pressure up, she's screaming... For someone who has been through that earthquake and all the surgery she's gone through... All that pain... When you think of it it's not surprising.

I try to help and be there for her. It helps when I sing to her, and we talk a lot. We're working on a Haitian recipe book - she is an amazing cook!
My kids call her. We have a schedule - they each call every other day, my mother calls every other day, Coffy calls 3 or 4 times a day. So that kinda connects her to a sense of reality. A lot of affection - I comb her hair, do her nails, give her a massage. Just trying to make her remember...
She's probably one of the greatest women i know.
I sometimes think of her as this big tall oak tree who fell. Someone who's wings have been broken. She says "life isn't beautiful anymore, what happened?".
And we're trying to piece the pieces back together, give her a reason to live.

She's out of her elements - everything here is different, the language, people, food, everything. Luckily there are many haitians around among the nursing and staff.

The mental state is going to be a key element in her healing.
She should be in normal "rehab" phase, learning how to move her leg again, walking on a walker, physical therapy, etc. But she's not able to do anything like that yet.
She's supposed to be able to do 2-3 hours a day of "recovery", but can only do 20-45 minutes. Most people stay on this floor 3-6 weeks, but her doctors think that her recovery is going to be 6-8 months because of her mental state - she can't participate in her own healing. It's going to take months and months... Her mental state is very poor, and that's our biggest worry.

We found a haitian psychotherapist that comes once a week. It's going to take a long time for her to be able to separate physical pain in her body from emotional pain - they became one for her.

Coffy's dad is here with me in the rehab place. He's getting dental work done and psychotherapy as well - he's waking up every night with manic dreams that as he says just get worse and worse and worse. As I said, we never thought about that part - the emotional stress.

Considering our family and our business, we've decided that I would be the best person to be here at this time.
What do my days look like? We now live in cambridge, I go between 2 hospitals probably twice a week. I'm taking my father-in-law back and forth to the hospital in boston to continue with his medical care (dental, heart), that's about a 45 minute drive. The other thing is to be with my mother-in-law during her therapy, because there's no interpreter here. They have a lot of haitian employees but overseeing rehabilitation care is critical, it's very different from a hospital - you have to be very active as a patient. So I'm advocating for her, to make sure that she gets the appropriate care. I don't mean to sound negative, but there's a lot involved, and they both have different needs.


One thing that we're trying to figure out, is if they can be transfered to Chicago. Northwestern had previously agreed to take her as an out patient, but she needs to be in a skilled nursing rehab facility, because she cannot do anything by herself. She can eat by herself, she can talk, but she can't go up and down stairs, she's still in a wheel chair, she can't do anything. She needs long term therapy, and Northwestern did not commit to having her in a rehab facility.

The Coffys were granted a 12-month humanitarian visa that qualifies them to get medicade through a federal or some kind of a government grant. They are both ok from that end. We're trying to see whether if she comes to chicago will all of that be covered. So far Massachusetts covered everything. Her medical bills are astronomical - we are so blessed to be getting this help!
I'm going through medical plans to see if Chicago and Illinois will accept them the way that Massachusetts has. Every state manages its healthcare differently, and I have to be very careful in thinking of moving them to make sure that they'll be getting the quality care that they're getting in Boston.



So where do we go from here? I don't know if Coffy and I can keep doing this back and forth for six months. I guess we could if we have to, but I wish our children did't have to suffer so much, it's becoming very difficult.

Looking back at it, I figured that I was so naive! When we learned that coffy was coming back and his parents are coming, we were going to have a party. It never even cross my mind... I thought that she would, by now, be walking again, with a walker or a cane... She's nowhere close. It's more the fear and depression that holds her back.

I feel like I should be apologizing. Coffy is much better at blogging.. I'm not doing as good a job that he has been... But how do you blog about something like that? About trying to get that woman's mind back?
She's endured so much pain. I don't have an answer for this one. I wish we were in Chicago, because we could ALL help, Spend a little time with her. Now it's just me.

There is a light at the end of the tunnel, I know that, as a woman and as a mother - she reminds me so much of myself - and I know that. I feel like the universe put us together, and it's very ironic, it's like looking at myself in the mirror, and i know there's a woman inside of her that wants to come out and walk! Her wind got broken by the pain and travel and all the stuff that you and I had just heard stories of, stories that coffy was telling us, but she was living it. When you stand and look at her, this is not a surprise that this is the toll that it took.

Despite the dark picture that I'm drawing here, I feel like there is progress. She'll get there, little by little, one step at a time.



[posted by keren for Yakini]