Gabe's Alive

A friend called me last week, and said, “So, I’ve been reading the blog and it seems like Gabe is doing pretty good…! Tell me, what’s the rest of the story? How are you guys really doing?”

I said, “Well….. It’s been pretty rough actually. Gabe is doing great and pulling ahead in so many ways. He’s become this fearless warrior, but at the same time, we are exhausted and way too lonely and way too busy losing time in the hurry-up-and-wait system we find ourselves in. So many people drop friendly notes and say they want to help, but people are busy living their lives and Gabe’s out of the hospital now. It’s not obvious how much need still exists so we go soldiering on, and break down, then go on and break down and the cycle is actually getting really depressing.

Gabe’s a rock star when it comes to facing reality and making progress, but the whole situation is still fairly heartbreaking and hard to adjust to on a day-to-day basis, and he really misses his New Jersey friends who knew him BEFORE the accident, who know him as he truly is, rather than as his physical situation…!

When Gabe was released from rehab, we both craved quiet, protected healing time. A little bit of peace and nurturing. But instead the demands have been enormous and we’ve been way too low on injections of love, joy and connection in these days. We’re finding these to be essential elements of healing and just coping in this long path to a new life, and we are just not in the right space to go out and make new friends at this moment. Our family here have been friendly, but not so available due to their own life concerns, so Gabe and I have mainly had each other–a teen boy and a single mom–and a ton of daily stress and uncertainty. We love and support each other, and sometimes we can’t help but take our grief out on each other a bit, too.

I am mostly OK, but often overfilled with concern for Gabe, worries about income and wondering when I’ll be able to turn more attention to my women’s clinic in India, although things are going well at Rasa Ayurveda. Gabe and I push ourselves hard to attend benefits appointments and doctor visits and etc. etc. We keep him going to the junior college every day, doing the physical activities there that are helping him re-connect with living. He had an academic counseling session last week, and he’s excited about studying media eventually.

Even tho in many ways things are going well, and by comparison, Gabe’s way ahead of where he should be at 4 1/2 months post-accident. But still, we are pretty weary. We need information, income and a home and we need boosting. I know there is support out there, but I don’t have time to connect with folks. I’m doing a lot of driving and emailing and a bit too much crying for anyone’s comfort. Sometimes I really struggle with making sense of the loss, of what feels like hopelessness sometimes in trying to understand how to navigate forward, how best to help Gabe. Then I desperately pray for Grace and hope I can be given the strength to carry on.”

I listened to the silence that finally came, and realized I’d just spit out way too much.

My friend said, “Yeah – I thought things had to be harder than you make it seem on the blog. You’re like the White House, only putting out the official story…”

What could I say thru my tears except: “Busted!”

OK – well, lots of ups and downs and bureaucratic progress and confusion and delay have been weathered in the last weeks, but instead of recounting all that, I’ll get right to the bottom lines here.

The good news: We got a car! A Honda Accord that now awaits hand controls (all things in our new world take lots of time) AND better: As pure manifestations of the blessings of GRACE, our friends Sean and Lilavati dropped their New Jersey lives completely to fly out here and show up for a love infusion this weekend. Hallelujah! We’re feeling way more alive already.

Now the bad news… Well, maybe it’s not SUCH bad news. Things could be worse, surely, and maybe this is just the next step on the way to Gabe’s walking forward into his life, once again. Anyway, here’s the clinical update from yesterday:

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On Monday Gabe met with Dr. James Neel, Physical Medicine & Rehabilitation, Santa Rosa, who is the trauma rehab specialist in this area. It took me 6 weeks of real effort to get Gabe in to see Neel. He refers patients to next-step surgeons, prosthetists, etc. He has been the ONLY DOC recommended by Gabe’s GP – Dr. Amy Shaw (who was Gabe’s GP when he was just a little tot!) and by others here, and Dr. Shaw did not feel she could write any kind of prosthetics referral until Gabe was seen by Neel.

He asked Gabe a few questions about his functioning:
“Are you able to bathe and dress yourself?” Yes.
“Can you move your own chair everywhere you need to go?” Yes.

I chimed in to say, “Gabe is actually pretty independent now. He needs help reaching things in the kitchen, doing dishes, cleaning and doing laundry because of accessibility issues, but he’s become strong and active again. He’s doing great on his new basketball team and is also enjoying adapted weight training and swimming at the Junior College. Gabe’s main tool for re-engaging in life has been to get physical, get moving, get out there, meet people…”

Then Neel examined Gabe’s legs carefully and asked a few more questions.

First, he looked at the left leg. He noted that this leg presented an almost straightforward rehabilitation situation, but that the “spicula” of bone that forms a knob at the end of the leg is creating a pressure point stressing the small area of skin graft there, reducing the circulation so when the skin is pulled tight, it becomes white and there is no blood flow. That could really weaken the skin, and we don’t want that.

Then Neel said that for this left leg, prosthetics should be avoided for a while, until this spicula is amended surgically, because even though modern prosthetics do not require weight to be born on the very end of the residual limb, the newer suspension system now employed will pull the skin tight and open up the graft. And we don’t want that! So prosthetics can be considered only after surgery for the left leg. He said that we might expect about a year’s waiting period, but that Gabe’s legs should be monitored regularly–beginning now–by bone scanning to determine when the growth has ceased. It’s best to wait until the growth has stopped to perform surgery to avoid the need to redo the surgery later after more bone growth, or to avoid the exacerbation of further heterotopic ossification creating new, problematic bone growth.

We’d been waiting for this doctor meeting to open the door to prosthetics for Gabe. Instead of direct progress, we faced the need to accept the unknown timing, to be patient, and start finding new ways to keep Gabe’s spirits and body in good shape.

Then Dr. Neel inspected Gabe’s right leg. Recently, some of the bone in this leg has actually grown thru the skin, frightening us all, and sending Gabe to the hospital for a series of x-rays that caused enormous phantom pain, and traumatic memories and fear of hospitals, surgeries, doctors.. the whole deal. I’ve been worried about this situation, because the thin skin graft seems so fragile.

(After seeing last weeks xrays and reading the radiologist’s report, Gabe’s general pracitioner –Dr. Amy Shaw– had mentioned to me that this is a calcification, not bone coming thru, which she said is significantly less serious.)

Still the skin is broken and Dr. Neel says this needs immediate remedy, but HOW to repair this–especially with other areas of the leg appearing to threaten new bone spurs (or whatever these are)–is the delicate and important question. If you could see the leg, you might understand how clearly challenging the situation is. As a health practitioner myself, as well as a seamstress, a wrapper of birthday gifts, a cook– and foremost once again, a mother–try as I might, I cannot come up–in my mind’s eye–with a practical way to address this situation without surgery. There must be more to learn…

As far as prosthetics go, Neel said, perhaps the leg can be surgically revised to move toward prosthetics more quickly, but there is a chance of losing more leg length, which is not desirable. The extent and location of the heterotopic ossification–coupled with the delicate skin graft lying directly on that bony tissue–make Gabe’s case an extremely complicated orthopedic situation.

Surgery now or not? It’s not clear.

Just when we were feeling the punch, Dr. Neel had to punctuate our gloom. “While I commend you very much, Gabe, for taking such a positive attitude and returning to your life,” he said, ”if you were my son, I would not allow you to play basketball at this time. If you were to fall out of your wheelchair onto this leg during your play–and falling out of chairs happens a lot during basketball play–you risk opening up the right leg, and that is dangerous for these reasons:

Bone tissue is extremely vascular. If the boney mass becomes compromised in a fall or injury, the bleeding that would ensue can be extremely difficult to stop.
If the skin graft covering is compromised, there is essentially no way to “close him up” because the skin is so tight and thin, and resting directly on the bone.”

We asked about any potential for protective gear for the leg. Neel said that there are clamshell style hard plastic covers that sometimes work, but could create additional problems in Gabe’s case and he doesn’t recommend this approach.

Then he said, “While the swimming program at SRJC is a good one, you must avoid public pools and any sources of bacteria now. You cannot risk a bone infection.”

Darn. There goes swimming too. Gabe’s been recently delighted to learn to compensate for the difference in body weight distribution in the water, which Gabe says plays all kinds of strange tricks on his body movement. He was excited to show me how he swims, and even do somersaults in the water already. “I feel like an otter, Mom, because now my body is so short,” he told me,. He was excited to show our friends the swimming he can do, too. But that will have to wait.

To sum up his recommendations, Dr. Neel said, “I have been doing this work for over 30 years. I review every trauma case that comes out of our main hospital here, and I have never seen any situation close to the level of complication I am looking at in your case.”

Neels says Gabe needs to head straight to a good medical center in a university setting. He recommends that Gabe and his case be presented to the staff orthopedic professors at Stanford or UCSF right away, so all can give their opinions and creative ideas and make their presentations in an orthopedic conference.

I reminded Dr. Neel that we do not have insurance or the ability to pay in cash. We have Medi-Cal here, or Medicaid if we were to return to New Jersey (which we are thinking about a LOT).

Neel said, “This is not a matter of insurance. This is a matter of getting Gabe the care he absolutely needs.”

Gabe said, “Mom – if I can’t play basketball or do anything to keep myself a little bit happy, I have to move back to New Jersey where I have friends. I’d rather lose my legs than live as some kind of weird science experiment anyway.”

SO, it looks like we’re back in the trenches on all kinds of levels, though we haven’t even had a chance to catch our breath or our hearts!

If anyone has any ideas or resources, we always appreciate your contributions! Already a few people have begun to help research what might be possible. I am not sure if there might be a medical center in New Jersey that could work, to allow some palliation of this loneliness during this challenging time that should be dedicated to healing, or if we need to stay in the Bay Area. And then there is the fundamental question of how to find the right medical care – East or West – for Gabe with our meager resources.

We are once again, called on Grace! Please do keep your prayers coming, friends. Even if we don’t email or call or post on the blog very often, please know that your care counts for us every single day, and hopefully one day soon, a more balanced life will allow us to connect in person…

With love,
Niika

PS-  I completely forgot to mention Gabe’s overwhelming tooth pain. Since the accident and all that’s come since, it’s almost unbearable to see Gabe in more pain. Anyway, after a few days of agony and sleepless nights, vanilla extract, ibuprofen and cloves, we found a dentist, and guess what?  Gabe needs an expensive root canal ASAP.  Oh Great Awesomeness – Just how strong do you take us to be?

PPS – Reading this over for typos, I recognize a pattern I’ve seen before. I’ve noticed in these months of crisis just about 12 hours after I completely give up in disgraceful despair, something gets better. Why I cannot have the satisfaction of being poised thru every wave, I don’t know. I keep trying. Anyway, hopefully, we’ll have some good news tomorrow!!