This is about a soldier named Kevin who was seriously wounded in Afghanistan in May of last year. He and three others were in a Humvee that was the target of a suicide bomber. Kevin and one other soldier survived. Leslie, Kevin's mother, began keeping a daily weblog of Kevin's and her ordeal. While she started blogging simply because it was a good way to keep a lot of people informed of what was happening, it quickly turned into a daily journal of a mother's nightmarish journey into hell. On June 4th, 2008 she writes:
[...] I am so embarrassed to say that when I walked into Kevin's room for the first time - within 30 seconds I literally dropped to the floor. I fainted. It was the most horrifying moment in my life. I really thought I was prepared. I knew his face was burnt. I knew he was on a ventilator. I knew he had goggles on because his ducts were burnt and couldn't keep his eyes moist. I knew he had tons of staples in his head. I even knew he was sedated. But honestly - nothing could ever prepare you for seeing only gauze and tubes and lips that were nearly burnt off.
And this is all before she realized how extensive Kevin's head injury was...
... continuing from above:
As for Kev...this is just so horrifying. A lot of what we were told just wasn't right so I will get on with what we are really dealing with here.
Let's see...his left ankle is fractured. That has been splinted so far. He did have internal bleeding and they did manage to get that stopped. I am told that only about 20% of his body is burned (don't you find it sad that I can say 'only 20% and be happy about it?). He is on a ventilator, but he should be off of that within the next few days.
So about the burns? They aren't even the issue. Up until now, I have not really told anybody yet, but the situation is much worse than we thought. We are pretty confident that he will breeze through the burns, which is just great. But the issue is his brain. I wasn't aware until yesterday morning that the surgeons in Afghanistan removed a "fair portion" of his brain. The blast destroyed it. We just don't know if he will ever wake up and if he does we don't know what type of lifestyle he will have.
Leslie has now made 225 entries in this journal (which she named "Mended Wings") and I encourage you to read them all if you can. They are, if nothing else, a testament to a mother's love for her terribly wounded son, full of fears and hopes, small successes, unexpected joys, major setbacks and lots and lots of tears.
I don't know these people, not personally at least — just through Leslie's writing. What I do know, though, is that things in the past few days have gone terribly wrong for her son. And I know that I want to do something to help but could really think of nothing I could do short of writing this diary and hoping that this young soldier's situation will be brought to the attention of someone who can do something.
Kevin's head injury was such that a large portion of his skull was damaged beyond repair. A complication typical with this type of injury is the buildup of CSF (cerebrospinal fluid). In Kevin's case the buildup of CSF has caused huge problems, agonizing pain, huge mood swings, and so on. He was given a shunt to drain away the fluid but it has been problematic from the start. There was much hope, then, that when they fitted Kevin with what amounts to a new, custom fitted skull piece (what Leslie refers to as "flaps") all of these fluid and shunt problems would be resolved (not to mention that Kevin's head would once again look normal as opposed to partly missing — see pics here taken about 6 months into his recovery and on a good day).
To say that things did not go well would be a gross understatement. As Leslie describes it:
[W]e had been led to believe that Kevin's head would be symmetrical with the other side and I can't stress enough that that did not happen. He is so incredibly disfigured that we are both still reeling from his appearance.
I was lucky, because I had about 30 seconds of seeing what his head looked like before he saw me coming so I had enough time to get over the shock (just barely) and I was able to mask my thoughts. I was also lucky in that I was only allowed a minute or two with him at that point while they wheeled him into ICU and set him up. This gave me the much needed time to recoil in shock and pretty much lose it.
You see, not only is his head sunken in about an inch, creating a large indentation, but one ear is almost an inch below the other and it sticks way out. These are things that should have been fixed then during surgery and I felt like we pulled in to a butcher shop and told them to do whatever. I am so seriously disappointed. One, in the doctors' performances and two, in my decision to have the surgery here. I made a HUGE mistake.
I can't begin to express how much it pains me to hear the mother of this soldier blame herself for having made a "huge mistake" when it is so apparent that the mistakes were made by the military medical personnel who were supposed to care for him.
You will have to read her entries for the past few days to understand just how badly things were screwed up but suffice it to say that the "custom fitted" skull replacement didn't fit and had to be reshaped during the surgery. It's rather obvious, given Leslie's description, that it was either originally way off or they completely fucked it up while trying to get it to fit right as nothing else would account for his head to end up as disfigured as it did.
That, by itself, would be bad enough but that is unfortunately not the end of the story. It just seems to get worse every day, now.
First, it turns out that the surgery did not correct the fluid problem - at least not at this shunts flow rate. When I went in this morning, Kevin's head was quite huge again - ON TOP OF THE FLAP!! I was under the impression that no liquid would be able to escape and the flap would keep it all inside forcing the shunt to work. Obviously that's not the case. His whole face is even swollen with fluid.
Second, although the shunt is programmable - NO ONE HERE KNOWS HOW TO WORK THE FLIPPING THING!!!! Literally! The doc and a company representative tried twice today to reprogram it to a larger flow rate and it won't work. I overheard them saying that they had texted a supervisory rep and they may have to have that person fly here to show them how to work it.
The docs also released us to go back upstairs to our normal room and I am so glad because...NO ONE IN ICU NOTICED THAT KEVIN NEEDED BLOOD!!! When we got back upstairs, our normal nurse was looking at his labs and called the doc immediately. The transfusion is currently on it's second unit of blood. I kept questioning all night last night why his vitals were up, but I was ignored. It turns out they were an important sign for low hemoglobin. I wish I had talked louder last night.
Needless to say, Kevin has been crying all day.
And then Jan. 11th:
I wish I could say that things are getting better, but they really aren't. I feel so trapped. Trapped because I don't feel safe here and yet we really don't have anywhere else that we can go. There are only 4 polytrauma centers in the US (and most of the people here have come from one of those four because they were so bad). Yes, I know we can go to the private sector, but Kevin shouldn't be in the cold weather (and this has been verified by many docs since first mentioned to me) and most of the best neuro hospitals are in the northeast. Too cold.
I got into a huge fight with our surgeon today and on top of that, I found out that Kevin really isn't stable enough to be back in his room - yet ICU won't take him and oddly enough - the neurosurgery team refused to be his primary team because they don't feel he is sick enough. Pretty funny considering he is leaking CSF and blood from his ear (which btw, leaves an opening for meningitis), his head is swelled again, he needed blood and he has a small hemorrhage in his brain from surgery. Not sick at all, right?
Oh, and did I mention that nobody actually did call the company rep for the shunt that nobody knows how to work? Yeah. They decided to just keep trying to figure it out all weekend, taking numerous x-rays in the hopes that the light will turn on and then if it doesn't - we'll just call tomorrow.
Do you know how to light a fire under the right asses to get this soldier the care he needs and deserves? Who can I contact? Who can you contact who can actually get Kevin the competent help he needs before it's too late?
UPDATE 1: My sincere thanks to all of you who helped get this into the rec list and to those of you who have found some way of helping. Here's some information you might find helpful if you would like to contact someone:
Kevin is at the James A. Haley VA Hospital in Tampa, Florida. His mail address is on the front page of Leslie's Mended Wings weblog. Contact information for Leslie is there, as well. The Hospital address is:
James A Haley VA Hospital
13000 Bruce B Downs Blvd
Tampa, FL 33612
I'd also like to address one issue that has come up several times in comments and that is my use of the "incompetence" tag. To be clear, I understand that there is a high probability of bias in the information provided by Kevin's mother. I don't see that as something that makes using the word "incompetent" wrong, though. It does make it hard to say exactly who was incompetent and exactly what proves that there was incompetency but it doesn't detract from the fact that Kevin's care in the past week has not been good. It may in fact be that mistakes made were the result of overworked individuals, or even individuals who were working with unfamiliar equipment or in circumstances they had insufficient experience to handle. Are they incompetent? Or is the incompetency higher up — with those who failed to attain adequate staffing and training? Or still higher up with those who have inadequately funded the care of injured soldiers? I don't really know for sure but I am certain that there is incompetency involved in what has gone wrong with Kevin.