I realize you have been inundated with information on Jamie but you deserve that we keep you informed with Jamie's progress. Jamie and I are still in ICU - and I'm back in my lovely green recliner chair. I mean seriously I need to have the chair bronzed, we spent many a night together when we first arrived at St Joe. But more importantly we're back with our old friends in ICU and I know Jamie is totally at ease being here. The patient/nurse ratio is 1 to 2 so if and when she needs pain meds they are not far to be had. So if she's comfortable I'm comfortable
Today was not a day that I looked forward to for Jamie. I was dreading this day when we would do the first removal & change of bandages. First I figured it would be painful and it was - according to Jamie it was the most excruciating, painful thing she ever felt. I was not allowed in the room during wound care and I'm sorry to say that I was glad. I feel guilty saying that and although I've seen alot since this horrible illness I just couldn't bear seeing my Jamie going thru this pain. The weight on my heart is to much too bear. But in typical Jamie mode she endured it. So along with her Doctor, doctors assistant, 2 nurses, nurses aide 5 doses of dilaudid, a couple of pushes on her PCA of morphine, it all only took 1 hour. The nurses admitted to me later that it took everything out of them not to cry.
A few new medicines have been added to jamie's smorgasbord of meds. A pill has been added for an infection, another antibiotic for a wound culture that has come back positive. Needless to say the pain meds have been increased. So here it is: Scheduled Pain Med: Morphine - 2 mg IV every AM - before wound care MS Contin - 30 mg oral every PM Ultram - 50 mg every 6 hours Lyrica - 75 mg twice a day - this is for phantom pain
PRN Pain Meds/As Needed Vicodin - 1 tablet every 6 hours Dilaudid - 0.2 mg IV every hour Morphine - 2-4 mg IV every hours Morphine - PCA every 10 minutes (pump) Remember the 4 above is AS NEEDED. She doesn't need to have it all - all the time
So as you can imagine it seems to be enough to knock out a horse and just enough to manage the pain Jamie is going thru. Unbelievable is a word that comes to mind. More importantly Jamie is comfortable and that's what is important to me. Her heart rate and BP are great considering it all, temp is good, too, and she has an appetite. By the way, her 5 day blood culture (that was drawn Thursday) is still showing negative. Praise God.
There is still a looooooooong road ahead as we enter into this next phase of Jamie's recovery and once again we find ourselves a little overwhelmed. Rehab and prosthesis are just a couple of new items on our list. So if anyone has any knowledge and can help steer us in the right direction we would appreciate it.
Okay - time to go - I'm feeling goofy and just a bit tired. Until tomorrow. Lots of love back to all of you,
We're almost through Jamie's first day after her amputation surgery. She's become a bit more accepting of what has happened, but she's in way too much pain to realize anything more about it. Physical Therapy came to the room earlier today to test Jamie's range of motion. She didn't like that too much. That was very painful for Jamie. After PT, she had Occupational Therapy come in. OT worked on her range of motion of her upper body in greater detail. That was a bit better. As for now, Jamie phases in and out of consciousness. She's taking a lot of medications and will be doing so until the pain becomes more tolerable. This is still the day after surgery, so its supposed to be the worst day...
Also, I should mention that before, when we were in the ICU, I bitched about how there was only one TV in the ICU. Now, there's two TVs! I guess people listened... now if they could do something about the two gigantic families that are in our waiting room. I can't hear either of the lovely tvs with these people making noise.
OK, another round of questions and answers. This seems to be a useful (an useful?) way to deliver this information. So, here... we.... go!
1) "Thanks so much for taking our questions, you look really tired." - That wasn't a question.
2) "Sorry. How's Jamie?" - She's doing ok. She was just taken off of the ventilator. Just now. She just hates being on those things. KC and mom are in there now with her, I'm sure she's trying to talk but though things really do a number on your throat. She has seen her amputations and she's on an emotional roller coaster right now. OK, perhaps it isn't a roller coaster, since she's not ever super enthusiastic about her amputations... maybe she's on an emotional subway right now. She's healthy though, and that's all we're hoping for right now.
3) "How long is she going to be in the ICU for?" - She'll probably get out on Sunday or Monday. Though, as I said yesterday (when the plan was for her to leave the ICU today or Sunday), you really can't rely too much on hospital time-tables.
4) "And you guys? How are you all doing?" - We're holding it together pretty well. Look at that, someone just delivered a box of flowers to us while mom and I are sitting here, so that helps. (Thanks, Kerry and Dave!!).
Anyway, just wanted to let you know what is going on this morning. Mom is off to eat breakfast with her siblings, KC is in the room with Jamie and I'm sitting in the waiting room watching our stuff and typing. Just another day in the life...
It's been a very long day. Jamie is resting in the ICU after her surgeries. She will be in the ICU until tomorrow morning at the least and may be in there for an additional day beyond that. She's on a ventilator and is heavily sedated for now. She'll likely be weened off the ventilator (man, this sounds familiar) tonight at midnight or tomorrow morning. She's on propofol again, which means that she won't remember any of what is going on right now. Mom, myself, the sisters and some other family members have been into see her. It's pretty intense, to tell you the truth. The blanket covering her body drops off suddenly at her mid-upper shin bone and then it falls to the mattress. The bed is flat beyond that point, and that's about the best way to describe the initial shock. Her hands are wrapped up in bandages now. Certainly, this will become normal in no time - probably after a few hours - but initially it was a jolt to my system. It was very difficult on mom as well. I'm sure it will be hard on Jamie too for a long while, but she'll come to terms with it as well. My only point with this section is: This has been much easier to write about than it was to deal with personally.
From our perspective, Jamie's surgeon did an excellent job on her legs and her fingers. Jamie went into surgery shortly after noon and concluded around 5. Dr. Lin came to give us a few updates during the surgery, but didn't want to answer all of our questions out of professional courtesy for Dr. Foot Surgeon. Well, after surgery, she came into the waiting room to tell all of us (me, mom, KC, Roni, Uncle Joe, Aunt Cindy, Uncle Danny, Aunt Letty, cousin Sara and A-teamer Michelle) about how surgery went. One of the first things that she made clear for us was that we couldn't really have waited much longer before doing these surgeries. Apparently, Jamie's feet and much of her ankles were dead and filled with puss. In short, there was lots of infection in her lower extremities, and this will remain a concern as we go forward during these next few weeks (skin flaps on the legs) and months (groin flap for the fingers). The final result on the legs is that the length on both are equal and sufficient for prosthetics. That is a welcome sign. Dr. Foot Surgeon told us that she started cutting on Jamie's toes, then her feet, then her ankles and so on... but it was infected and dead up until the calf. This is the approach that we begged the surgeon to take with her feet, and so we feel confident that every inch of good tissue was saved. We needed to feel that way after the surgery, so that's good.
As for the hands, we didn't get the clearest answer ever. Some of the fingers are going to have some length on the first/PIP joint (if I had more time, I'd link to the old post here with the picture of the hand), but none of them will have the entire thing. Some won't have any length beyond the palm. Her left ring-finger was left a bit longer than Dr. Foot Surgeon would ordinarily leave it because its the ring finger and she'll be needing that one day. (I don't know why I'm still calling her Dr. Foot Surgeon, but whatever). Jamie's right thumb will have some gripping action, and, in conjunction with her right pointer, middle and ring fingers, will have some good pinching ability. Her fingers on her left hand are worse than the ones on her right. How much worse? We can't be too sure.
We're glad to be back with our old friends in ICU. Steve and Sarah greeted us when we returned to the ICU. They were glad to see how far Jamie has come and told us that as long as Jamie is here, she'll be treated like a queen. Megan, one of Jamie's old favorites will be taking care of her tonight. I should go say hi to Marci again. Maybe I'll buy her some cheesecake again. Also, Shantea (pronounced Shawn-Tay-Uh) was working security. Good to see the old friends.
There are a lot of open issues ahead of us: - There's this area of her kneecap that is exposed. We're concerned about that area becoming infected. We were told that, even if it is infected, the kneecap can be removed. So, that's nice, I guess. But I think we'd like to avoid the whole issue as well. - When do we get out of ICU? It should probably be in a day or two, but we've been given time tables before. - Mom just said "She has Sake-legs!" We all thought that was cute. Jamie has short stumpy legs like our dog, Sake. If mom can say that, then its ok to smile. - Infection, infection, infection. We told the ICU folks that we're going to be on top of the rules here. "This is our final exam on this issue. We're on top of it." This is our biggest issue, and you should probably stay tune to see how visiting should be handled in the near future.
Finally, sorry about the problems with the comments. Just some slight kinks in the system. Please comment as much as you'd like (or more) though, I don't know why they're asking me to moderate, but I'll let them through asap.
As you already know (from reading the title of this post), Jamie will be having her amputation surgeries on Friday, February 6 at noon. In brief, the surgeries performed on Friday are two Below the Knee Amputations (“BKA”) and ten Finger Amputations (“FAMPS”; yeah, I made this up just now). The FAMPS will involve only the removal of dead tissue, but there’s more on that below. She will indeed be losing the majority, we think, of most of her fingers, but, in typical doctor fashion, we haven’t been told anything specific about what can be saved and what can't. The doctors can’t confirm what can be saved until they’ve cut into the finger skin to see how deep the necrotic tissue goes. So, though they won’t be sticking Jamie’s fingers into cigar cutters (SNIP!), they’re not sure how much will be saved until they’re in there.
Speaking of “we won’t know what we can save until we’re already in surgery cutting” (that needs an acronym too), Friday’s surgery is taking place exactly two months, to the day, after we were told in Austin that Jamie would require two hand amputations at the wrist and faced the prospect of having one, if not two, above the knee amputations (“AKAs”). As you know, that sage advice, and a fortunate introduction to Dr. Lin a few days later, was all it took to make us leave Austin for Houston. (Also, whereas that conversation took place on 12/6, Jamie’s surgery will be taking place on 2/6. My lucky numbers are 126 or 26 FYI. I’m not cool).
Now, the introductory stuff is over. I’m sure you have questions about this and I want to get to all of them. So, let’s take it from the top. I’m going to think of questions that have been or will be asked of us and answer them, in turn. And here we go.
1) “What the Hell? Didn’t I JUST see a report on TV that said, basically, ‘Jamie’s recovering. Everything is cool.Hyperbaric chambers are magic?!?’ ”
- First, yeah, that IS indeed an odd coincidence that we're going to surgery the same week as the report.Here’s the deal: On Monday, everyone comes in to interview and record Jamie and friends. What a good report, btw! On Tuesday, at literally the same time that the report is airing on the 6pm news in Houston, KC and I (Roni had a time-conflict) are speaking with two of Jamie’s doctors about her condition, advising us on the risks and potential benefits of further delaying Jamie’s amputations. It was during this phone conference that we decided to move ahead with the surgeries as soon as possible (at least, as soon as possible for non-emergency surgery), which ended up being Friday at noon.
2) “What did you all talk about in that meeting on Tuesday? Haven’t you all been pretty staunchly against the idea of cutting too soon? What caused the change of heart?”
- While the details of our talk on Tuesday aren’t any of your business (nosy), there isn’t too much exciting information that forced us to change our minds. We’ve always looked at this as sort of a sliding scale. On the one hand, we had weighed the risks behind waiting to perform the surgeries - sepsis, infection, getting necrotic tissue into the blood stream, wet gangrene, death – and the likelihoods of their occurring. On the other side were the benefits – saving fingers, legs, feet, walking – measured against their percentages. Basically, our position has never changed, but over the last few weeks, we’ve seen the rate of recovery slow down, as has been expected. There have been additional complications, as discussed by mom in her posts. These include the blood clot caused by the pic line, some puss action near her foot, the flare up of MRSA on her hand, the catheter Jamie’s had for almost three months, and so on. The percentage chance that these problems could cause her to lose all of the progress she’s made has steadily increased over time. It hasn’t spiked or anything, but it’s been looming larger as of late. On the other hand, the consensus seems to be that, despite our major strides in saving a lot of “grey-area” necrotic tissue, we physically cannot hope to resurrect what has died a few months ago (After all, Jesus was only down for three days, not three months, so I’m not sure we can expect a similar miracle).Basically, the chances for improvement are now outweighed by the chances for disaster. In the end, after KC, Roni, Jamie, mom and I got together to discuss, it was an easy decision, albeit a terribly difficult situation.
3) “OK, quit rambling. What’s the deal with her surgeries? Shouldn’t you get to that?”
- Sheesh. OK. As I mentioned above, Jamie will be having two BKAs performed on, duh, her legs. She’ll also have the FAMPS performed on her hands. [Last time I’m saying this, but NO her hands aren’t being cut off, just parts of her fingers] The surgery will be at noon tomorrow, Friday, February 6. No, I don’t know how long it will take. I’m sure we’ll post something on the internets about this once we know anything. [UPDATE: The surgery should take less than 4 hours] Now to the specifics –
Legs – As far as amputation surgeries go, BKAs are… wait for it… pretty cut and dry. ZING! What we’ve been hearing is that you cut the legs so that the stumps fit into the prosthetics. I’m not sure of the exact length needed, but I do know that Jamie has more than enough viable leg. As a general rule, you amputate so that there is less bone remaining than there is skin remaining. This is how the human body generally works. Otherwise, we’d have bones sticking out of our fingertips.Jamie will leave surgery with two open wounds on her legs and then, 2 to 3 weeks after Friday, we will use one skin flap per leg to close the wounds, once they are sufficiently clean of infection, necrosis or whatever. That about wraps it up, for the legs.
Hands – This is a bit more interesting. On Friday, we’ll do ten FAMPS. Now, remember what I just said about the general rule being that you leave more skin than bone? Well, here, we’re going to do the opposite. We’re going to save as much bone as possible because we’re going to try to grow tissue on those appendages through a procedure called a Groin Flap. Essentially, two to three weeks after the FAMPS, they’ll perform another surgery. The Groin Flap refers to (1) an incision that they will make in her abdomen or groin, then (2) they will take one of her hands/set of fingers and place it into that flap and leave it there for 2 or 3 weeks. The point is that, when surrounded by other healthy tissue, the extended bone-stumps will be able to support tissue growth and will lead to longer fingers. That’s the plan. Once one of her hands has been incubating in the groin flap for 2 or 3 weeks, we will remove Hand 1 and then do the same thing for Hand 2.
4) “Wow, this sounds intense. Sorry for being such a jerk with my questions, earlier. Can/should we come visit? What’s the best way to help?”
- Hey, it’s all good. I’m not sure about the best way to help right now. I know that Jamie appreciates all the support and loves to receive letters and things like that. Unless you’re a starter on the A-Team, then perhaps you should postpone your visit until next weekend, subject to any changes. I mean, look: Food is nice, but you’re really just feeding us, and we don’t need anymore chocolate.Starbucks gift cards are always welcome too [ :)]. In fact, I could still use a new laptop… ok… just kidding (no I’m not, I need a laptop). In the past, we’ve had some great offers to send products/devices(voice recognition software is a good example), but we hardly know what our needs will be in a week, let alone a month or a year. So, for the time being, just keep praying and sending support through whatever medium you see fit.
There will be more updates coming, but I’ve got to get on the road to Houston. This news conference is over. Peace out.
I'll come back tomorrow to edit this further, but there is a big update coming about Jamie's amputation surgeries and this is just to give everyone the important facts. I'm just exhausted right now... its been a bit of a draining week.
After consulting with our team of doctors in Houston, we've decided to go ahead and move forward with Jamie's amputation surgeries on Friday, at noon. These are the amputation surgeries that we've always known were coming.
Jamie will have two below-the-knee amputations (BKAs). These are relatively standard. They cut the legs so that there is a certain amount of shin-bone remaining. Jamie has more than enough, so she should be fine.
Jamie's fingers/thumbs will be amputated to the extent that the finger tissue is necrotic. However, this is where things get interesting. They will save as much bone length as possible, and then, in 2-3 weeks, they will perform a procedure called a groin-flap. This means that, one at a time, Jamie's exposed (I think) finger tips will be placed within her skin. Then, surrounded by skin tissue, it should encourage real skin to grow around these extra bits of bone/finger-insides. Then, after a few weeks of that, they'll do a groin-flap with respect to her other hands.
There are other considerations, other details and other bits of information to get out there (like, HEY, Jamie's story has been told on ABC-Houston and CBS-Austin lately), but I'm trying not to exhaust myself before a busy weekend. There will be more details tomorrow before I drive to Houston. Sorry to be brief.... stay tuned.
Another late night but I wanted to write to update you with Jamie's new information. It's been a little crazy trying to get Jamie to eat and keep it down. The antibiotic that she is on causes alot of nausea. So we try to counteract with nausea medicine. The last time I posted I mentioned "Protein". Well that ugly word just seems to raise it's ugly head constantly. Jamie's nausea/vomiting keeps any nutrients from absorbing into her body - causing her protein/albumin level to lower almost to the malnutrition level - causing her risk for infection to increase - which then puts the situation in a serious state. A vicious cycle. I feed her slowly, an 8oz container of yogurt can take an hour to eat just so that she can keep it down.
The good news is that her temp has been okay within the last few days. We decided to d/c the time released morphine. While Jamie was only on it for a week it was not a good week. She slept constantly and was barely awake enough to eat or exercise. Two very important things Jamie needs to get healthy. I'm sure that one week didn't help her protein situation - see that word keeps coming up. The message here is to remember to eat your proteins - it's very important for your health
Well most importantly and very exciting is the visit we had today from ABC channel 13 HealthCheck reporter Christi Myers. Christi and cameraman Bob we're very pleasant and it was very nice meeting them both. The report will air Tuesday night in Houston at 6:pm. In fact we've already seem a commercial on the story. Christi has also sent her story to the ABC affiliate in Austin. That report (for all our Austin friends) will air Wednesday at 6 pm. If you can't tune in be sure to go to ABC13.com to follow link to Jamie's story. Pass the word and let us know what you think. Thanks to Fritz Guthrie VP Marketing at St. Joseph for helping us get Jamie's story out.
It's time to go - btw it's 12:30 am - and I'm going to try to feed Jamie some liquid Protein - there it is again - ha!
As always and more importantly please remember Jamie in your thought & prayers. She really needs them now. Love to all our family and friends.
