1/15 - A big (and long) Thank You to the St. Joe's People [Almost no medical info here]

As Mark Twain once said, "I didn't have time to write a short letter, so I wrote a long one instead." You get what's coming, right?

Even though I'm away from Houston, that doesn't mean that there aren't some important things I can add to the discussion of Jamie's situation. This post, which I've been thinking about writing (and have been writing parts of) for some time now, is long overdue. The purpose of this post is to show our appreciation for those people who have made an incredibly difficult situation more bearable and, frequently, pleasant. Overall, I think I can speak for Jamie, my mother, sisters, family and friends when I say that the overwhelming majority of individuals at St. Joseph made (and make) us feel like part of their family. Of course, being who we are, we're quick to return that sentiment.

Before delving into the specifics, here is a good example of what I mean by "part of the family": This past Sunday, we accompanied Jamie to the hyperbaric chamber (HC) for her daily treatment. Something that most of Jamie's supporters may not be aware of is that the Advanced Wound Care (AWC) center (which operates the HCs among other things) is not open on the weekend. This means that in order for Jamie to use the HC on the weekends, people need to give up parts of their free time, drive to/through downtown Houston and then stay in the AWC room for a few hours. So, here we are on Sunday morning, and Dr. Lin, Lupe (one of the many smiling faces in AWC that loves Jamie and vice versa) and several other AWC team members are there, smiling, waiting to greet us. But, not only are these people there, but we were able to meet Dr. Lin's two sons, who are about as adorable as they come (think John and Kate plus Eight.... then subtract 5 girls and one boy) and Lupe's daughter. Mom, of course, had already met Dr. Lin's children and was excited to see them, as was Jamie. We introduced ourselves around the room - Uncle Zeke, Aunt Shirley, mom's cousin Lecie (sorry about the spelilng) and her husband were there too - and the feeling that I got from that was... the best way to say it would be: inclusiveness? camaraderie? I realized then that these people aren't just here to make sure Jamie survives or completes another dive in the HC successfully... they're go the extra mile because they care about Jamie, about her feelings, and her well-being on a personal level. To make the point even more clear, I was told today that the AWC folks gave Jamie a gift - a Doctor Teddy Bear that sings... Just adorable. The HC is a scary place, and maybe these folks are trained to be welcoming, but I don't believe that to be their only motivation. These people appear to sincerely care about Jamie, and I don't think they're not alone. This is why I wanted to take the time to thank people, specifically, for the kindness they've shown, for the work they've performed and for the sentiments that they've shared and impressed upon us. (As always, I break this into sections)

Doctors - First and foremost, we owe a tremendous debt to Dr. Lin. For those of Jamie's supporters that just recently began following her progress, we were told on December 6 that Jamie would lose both of her hands and, maybe, would require AKAs (above the knee amputations) on both legs. Dr. Lin was one of the only doctors in the state/country that, in addition to giving insightful advice, gave us hope and optimism. We fought to get Jamie to Houston because he promised to fight for every inch and millimeter of Jamie's extremities. Now, several weeks after I first spoke to Dr. Lin, he has remained true to his word and steady in his prognoses. He hasn't been selling us magic beans or any sort of false hope. He is literal, precise, detailed and direct. Everything he's said would happen, so far, has happened and he's only been surprised by how well Jamie is responding. Dr. Lin made himself available to us on a constant basis, and we haven’t been shy to take advantage of that. The orthopedist who has been seeing Jamie exudes a level of concern that is rare among doctors – once you’ve observed the bedside manner of over a dozen doctors/specialists, you learn the difference between Bedside Manner and true compassion. Our orthopedist is from the latter group. Her advice and counsel with respect to Jamie’s hands and feet are wonderful and coated with her warm intentions. This woman also went out of her way to introduce Jamie to another woman in the Houston area who was afflicted with the same illness. This was done to help Jamie’s mindset, a part of Jamie that this doctor is not required to concern herself with. This willingness to go the extra mile… these are the feelings that I’m writing about today. Her plastic surgeon consult has been equal parts pragmatic and optimistic. A welcome change from prior plastic consults.Finally, we can’t forget about Dr. Thai… or, we shouldn’t forget about Dr. Thai, but I did when I first wrote this post. He’s Jamie’s intensivist and oversees a wide range of Jamie’s medical issues that are more typical of a usual ICU patient and he’s come with us to care for Jamie in her new room(s). He’s an insightful man, and more than almost anybody, he presents ideas that are “outside the box.” Seems like a great guy to rely on when you're in a bind...


ICU Nurses – Of course, when the doctors are needed elsewhere, Jamie has benefited from the careful and caring attention of many of the finest nurses we’ve seen (that IS a compliment, we HAVE seen a lot). Specifically, we want to mention Cody, Sarah, Jessica, Megan and Donna. We appreciate the fact that some of these individuals come find Jamie in the George Strake Building to say hi after pulling back-to-back-to-back shifts. These people have invested parts of themselves in Jamie’s recovery. Each of these nurses spent long nights with Jamie, helping her when she needed painkillers or when she needed to barf. They’ve seen Jamie at her best and worst, and have seen us, Jamie’s family, go through the same mood swings. Cody, in particular, had the fortitude to tell us (read: Jamie’s mom) when we needed to reign things in, and I really appreciate that because it couldn’t have been easy to do (read: its not easy to tell Jamie’s mom anything about how to take care of her own babies, damnit!!). Also, I’d like to personally thank Marciella, the, well… I don’t know what she does. I guess she’s the main admin nurse (I made up that job title). To me, she basically runs the show in the ICU (well, except for the man with grey hair and rockin’ moustache that actually does run the ICU… Fred?). She showed me the ropes, let me know what the rules were; she was quick to let me know which of our actions were permissible and which weren’t. I also bought her cheesecake. That may have helped too. Oh, and how could I forget Waddell? This gigantic, wonderful, infinitely endearing man is responsible for transporting patients to and from the ICU. His kind smile, I’d like to believe, never fades. He’s always joking with folks and really seems to enjoy his job. He tells everyone he’s 28 and been working at the hospital for a few weeks; on the other hand, everyone else tells me he’s been working there for at least 20 years and seems to outrank everyone. I love that guy.

[Also, much love to Shantéa (come on, you wouldn’t know how to spell it either) and Princess. Two of the nicest security guards around. I know there’s a few more, like that cool Hispanic guy that I like. Sorry, but, as you can tell, there are lots of names to remember… or forget, as the case may be]

Hyperbaric – I’ve already mentioned our friends in AWC, but Lupe, Allison, April, Lyndy Lu and Janice (I hope I mentioned everyone) continue to help Jamie make the best out of an uncomfortable situation. As you may know, Jamie’s not a big fan of the HC, and, being relatively immobile, Jamie requires a lot of attention. These folks have really come through for us. They come in on the weekends to make sure Jamie gets daily HC treatments. When we need anything at all – supplies or personnel – they are our biggest advocates. Thanks guys.

Wound Care – I know that this is one of Jamie’s favorite parts of the day. She loves to see the progress that she’s been making and the Wound Care folks at St. Joe’s have gone through great lengths to (1) let Jamie be an active participant in the daily debridement procedures, (2) cater to Jamie’s needs, concerns and tolerances, and (3) answer any and all questions we have about how Jamie’s disease is progressing down her legs and hands. If Jamie wants to treat one leg at a time instead of both legs simultaneously, they do it. If Jamie wants Monina to try to remove some scabs/tissue on a specific area, the WC team will give it their best shot. Specifically, we’ve enjoyed seeing folks like Monina, Michael, Christina, Billie, Barbara and the rest. It’s not an easy task, taking care of Jamie’s wounds. Jamie’s wounds require these people to have such an acute attention to detail. These people have been informative, comforting and compassionate. Very good stuff.

Physical and Occupational Therapy –Vijay, Eileen and all the other PT/OT folks come see Jamie once a day, each. The goal of each treatment is to restore movement and strength in her extremities, which can only be accomplished by stretching and reactivating Jamie’s muscles. This hurts Jamie. Every. Time. Yet, when OT/PT's goal is to make the patient (1) push themselves until it hurts and (2) hold that position, I can imagine that it could be seen as a thankless job. Nothing could be further from the truth. I know that this is the hardest part of the day for Jamie, but we know how important it is. We’ve written at length about Jamie’s advances in arm/leg strength/function, but, if I didn’t take the time to thank Jamie’s PT/OT folks, I’d be missing a major piece of the puzzle.

IN CONCLUSION – (Wow, if you read this far, kudos!) – We’ve met many, many people along the road to recovery, and I can truly say that I have a place in my heart for each one of them. We haven’t been, let’s say, the most calm or easy going family in the world to deal with. The people at St. Joe’s have, to date, given us pretty much everything we’ve needed in order to make Jamie’s stay as comfortable and conducive to her recovery as possible. I’m heading down to Houston tomorrow to spend the long, MLK holiday with Jamie and I couldn’t be happier. It’s nice to know that I’ll be able to see all of these new friends that we’ve made. Hopefully, we’ll be able to wheel Jamie around the hospital sometime soon to say hello.

Once again, sorry for the long post, but there’s just too many people to thank. I love you all…. Except you…. (no, not you… you’re cool.)