Happy New Year!!!!
I’m writing one group letter to all of my friends and relatives. It is a long one but it brings you up to speed on my sister’s accident and recovery efforts to date. Some of you may already know much of this but since I’ve been rather bad at keeping in touch, the majority of you probably know very little. I had meant to keep things up to date on this website – but the reality is – it is not that easy to write about. (Though you will find that surprising when you see how long this letter has turned out to be!)
Yes, Lori, my youngest sister had a bad car accident about 6 months ago. (She didn’t hit another car or person and she had no passengers, so there are things to be thankful for.) She had a complete break at C7 with permanent damage at C5. She is paralyzed from the chest down. The good news is that she has limited use of her arms and she is not on a respirator. The bad news is that she has no use of her hands, though she can fake it by using her arms to help her thumbs push down on things -- we had hoped briefly when the accident first happened that she could get some real thumb use but that was before we understood that she was a C5. (Such language we speak these days!) It is impossible to convey what we went through as a family in those first days and weeks that she was still in the SIC unit. I wish no one to experience this. Because she was intubated, she couldn’t talk the whole time that she was in SIC and the doctors advised against telling her that she was paralyzed until she could ask questions. All I can say is that it was sheer hell as we came to understand her condition, and then all over again as we came to help her understand it in the weeks that followed. Though from the start, my sister surprised us all by how well she accepted he condition and how willing she was to make the most of her new life. I suspect the realization that she nearly left her children motherless, helped her to be more thankful for the life she now had. (Then again, they did give her a lot of heavy duty drugs.)
She went to Spaulding Rehab Hospital shortly after the 4th of July and was doing very well with her PT and OT for the first month or so. But then in late August, days before she was due to come home, she got waylaid with a stage 4 pressure ulcer on her lower back. Essentially a stage 4 pressure ulcer is a big hole in the body that extends all the way to bone. If one were not paralyzed the pain would be so great, that it is very unlikely to not ever get to this point. But with no “alarms” to speak of, it is the greatest danger to those with spinal cord injuries. (Christopher Reeves died from a reaction to the drugs used to fight the infection from a pressure ulcer – imagine – he had the best care in the world and he STILL had pressure ulcers. This is not actually a comfort to us, but does relieve some guilt, I suppose.)
The family is still mystified how this happened while at a hospital. I mean, on one level we know that our health care system isn’t perfect – but still this is OUR loved one and it seems quite unforgivable. There is some speculation that she left Mass General with the start of the pressure ulcer (say stage 1), but it is very unclear to me if that is the case. My sister Wendy swears she saw something while at Mass General. Since none of us were experienced enough to check her, we will never really know. What I do know is that she is very, very skinny (probably weighed about 100 lbs at the time of the accident) and that she was not understanding the importance of protein (nor were we, I suppose). Lori has always watched her weight, so trying to convince her to eat (without the ability to exercise) was hard (unless it was a Nutty Buddy Ice Cream cone, I had a certain amount of success with that one bad food). Also, she was spending 8 hours or more a day in a wheelchair, which probably didn't help either because of her “skinny little behind.” At least she was happy at that stage; we were all very amazed at her good attitude -- and very proud of her. Anyway, I had sat through the "skin class" with her and though I learned a lot, what I did not know was that she was already well on her way to a stage 3 pressure ulcer. In hindsight, I can say that my sister treated this class like any "boring" science class and did not understand that it was all about her. And me, I trusted that she was getting checked “all over” everyday by the staff. And since this is the only class her husband did not attend, it is unfortunately, since he might have been the only one to really get what was going on. At that point, he was the only one to see what we now refer to as her “public” parts. It was shortly after I learned about the advanced pressure ulcer that I stopped leaving the room when the curtain was pulled.
When the pressure ulcer hit stage 4, Spaulding decided that she should stay in bed and out of her wheelchair for a few weeks to see if it would heal on its own. At that time she was experiencing severe Automatic Dysreflexia (A-D)(which was pretty damn scary until we came to understand it) and thus she really couldn't do any more therapy or sit in her wheel chair for more than an hour at a time. She was having problems with her indwelling catheter, which is a classic cause for A-D. They ended up giving her a supa-pubic catheter (I think that's what it is called!). But, I suspect that the hole in her back from the pressure ulcer might have been the main cause for her frequent A-D sessions. (She became the star pupil for classes on this subject since she seemed to practically have a case of it on will.) Because, when you are going through these kinds of experiences, everything is one day at a time and one thing after another, I’m a little sketchy on time but I do know she hit an all time low around the second week of September (just days after her friends had put together a big successful benefit to raise money for her family), and that she was rushed to the hospital because of a problem with the bladder and that if it had not been caught, she might have died (though this remains unconfirmed, our Internet browsing at the time led us to this conclusion). This was the same week that my 91-year-old grandmother (Avis) was sent to the hospital because her stomach hurt and ended up being diagnosed with colon cancer and after being told she only had a few months to live, was dead by the end of the week. Yeah, tell me about it!
Needless to say, after mostly laying in bed for weeks (being turned every 4 hours), it did not change the dimension of the pressure ulcer, in fact, if anything it was getting larger. At some point, they decided to try the "vacuum assisted wound closure" on her. And after a few weeks of that, they decided to operate. She stayed at Spaulding another couple of weeks and then they sent her home for full recovery. That was around the third week of October.
Homecoming was a challenge -- by this time her 4 kids had been running wild all summer -- going from one friend or cousin's house to another. (Vin, her husband, was at the hospital nearly every single day – some days with kids, other days alone.) Then school started and they had to find a routine that did not involve mom driving them back and forth to school and to their many extra-curricular activities. Plus, there was no mom to nag about the homework every evening. And with Matthew getting that much older, he was ready to join Pop Warner – so Vin was further stretched. (One thing I have to say, is that Vin and Lori both agreed that the kids should never have to blame their mom’s accident for ruining their life, so Vin maintained the busy schedule.) Vin made due as best he could – but during this time, Adam, the fifteen-year-old, managed to get expelled from school for fighting; Devon’s best friend’s mother informed me that Devon (11-years-old) needed to start using deodorant; and fights between Matt (ten-years-old) and his Dad were so bad every morning that Vin was getting desperate (and the other two kids were, too, which is the reason why I know about this). Let’s just say, EVERYONE missed mommy. Mommy needed to come home.
Home construction was still underway -- somehow the job of converting the house over to be handicap friendly was taken on by Lori’s ex-husband, Jim. (Actually, this meant that the kids did have two dads sharing the kid raising duty for a good part of the summer. Still, two dads do not make up for one missing mommy.) The major construction job was to turn the two bedrooms and bathroom on the ground floor into one large bedroom and a handicap accessible bathroom. Devon, (the daughter) is now in their old upstairs bedroom and their oldest son, Tyler, was totally displaced, but since he was on his way to college they decided that he could use temporary sleeping quarters in the sunroom (not that this actually worked out). Furthermore, Lori demanded that Adam, the 15-year-old and Matt, the 10-year-old swap rooms so that that Adam would end up on the ground floor and she’d be able to keep a better eye on his activities. Raising teenagers as a Tetraplegic (we learned early on that Quad is no longer the proper term) is certainly an extra stress that Lori would not wish upon anyone! Anyway, Tyler is still free floating around the house during the winter break from college -- but it all seems to be working out. And Jim (her ex-husband) did manage to get the house ready just in time for her homecoming. And my mom went over to help with the cleaning so that it was hardly noticeable just how wild things got in Lori’s absence! Although, I must say that Vin did do a good job of keeping things together, despite how distraught he was during her hospital stay. At one point, Lori was not due to come home until just before Christmas and I’m not sure how well her family would have survived until then. As it is, it seems she came home in the nick of time for everyone’s sanity.
She stayed in bed during the remainder of the recovery time from the operation – that is, for the next four weeks being turned every 2 - 4 hours by her husband -- but she still managed to develop a second pressure sore. During this period she had a visiting nurse, a PT and an OT come in on a daily basis but the majority of personal care was being done by her husband. (If this weren’t such an open letter to all, I could go into some funny stories on this subject – things you’d never want your husband to have to do for you!) This time we could not blame it on her eating habits or lack of protein -- she is dutifully drinking 2 to 3 Ensures a day and Vin (being Italian) loves to feed her. And she’s being good and complying. For our part, we let her go through her complaints about weight gain without seeming to patronize her. I’m sure she’s up to a whole 110 by now!) In mid November, she went back to the surgeon for another consultation. At first they thought it was something that happened during her home care, but in the most recent doctor’s visit (this past Thursday), it is now thought that incomplete drainage from the first operation caused the second pressure ulcer. After her first visit to the doctors, it was decided that she should have a second operation and so she scheduled it for after the holidays, specifically for January 4th. Since she would be having an operation anyway, she was told that it would be o.k. to get in the wheelchair for an hour or so each day since it wouldn't matter. (They gave her a donor wheel chair, something straight out of the 1960s that she can't sit in for very long anyway!) After a meeting with her insurance company and the health care people, it was also decided to that she should be put on the “vacuum” again.
Meanwhile, Vin, would go back to work -- he works for the government and had a LOT of comp time stored up. Did you know that government employees can donate time to other employees? Yet, Vin had so much time stored up, that he never even took advantage of his coworkers’ donations! Anyway, Massachusetts approved Lori for 56 hours of personal care time and so they hired two different woman to come in take care of her during the day. I must say that taking this burden off Vin has made a big difference. Part of their job is to help Lori with some of the household tasks that she can’t complete herself, such as cleaning and laundry. So the house looks great and Vin looks all the better for returning to work. Though he still has to wake up every few hours and turn her. (They tried to get the bed that automatically turns the body, but she couldn’t get the bed approved since HillRom (bed company) says it is not intended for tetraplegics but for people with circulatory problems.)
The new pressure ulcer had to be measured one more time before the January 4th operation, so that is why she went back to the doctor’s this past Thursday. (She has to take an ambulance each time she leaves the house... initially she found this embarrassing but as with everything, it is now just a routine thing. Besides, she likes to flirt and joke with her ambulance drivers, who are always the same two guys. Sad to say, her social life has come to this!) But this visit ended in bad news. The doctor decided to NOT operate, which devastated her. Basically, if she has the operation, she will need to stay in bed for another six weeks to recover. She was not happy about that, but felt it was a definitive amount of time before she could get on with the rest of her life. So, now with no operation, it is open ended as to when she will be recovered enough to continue with her therapy. During the meeting with the insurance company and health care people, it was restated that they will want her to go back to Spaulding for the rehab. Even though she does not want to leave the kids again, she feels this is the only way that she will learn to use her new body to the best of its ability. All she knows is that she can NOT stay in bed for an indefinite period of time. So, she's decided to take her chances with getting in her wheelchair for a brief amount of time each day. This was great during the holidays since she got to participate Christmas morning from her wheelchair with the kids and later in the day, with all of us. She almost felt human again. (See photos!)
The thing we are all looking forward to next is getting the wheelchair! Can you imagine, it has taken SIX MONTHS to get a wheelchair. Since I do not have to deal with the paperwork, I do not know the whole story, but I do know that Vin has had to file a lot of paperwork and has had to play the waiting game. Since Lori was bed-bound anyway, it did give Vin a little extra time to wait out the system. (Ah, the waiting game – it gets rejected and you submit again and again.) So, he was able to get her approved for the exact chair that she wanted WITH the extra feature of having the seat lift up and down, which means that she can fit under tables or reach up to counters more easily. She can even look taller people (like Carl) in the eye. (I need this!) All of this helps with quality of life, which means it is a soft qualification. We were told over and over again that the lift would not be approved, unless there was a chance that someday Lori would be able to get out of bed by herself. (Does this mean? NO! It is so easy to insinuate hope even when you KNOW that it’s never going to happen.) Carl and I did purchase that very last optional feature that was not approved -- the ability to lift the legs up and down, which will help with any Automatic Dysreflexia should she experience that again in the future. (Actually, I’m lying if I say it wasn’t approved – it wasn’t actually requested because the lift was such a long shot, why complicate it. Maybe we could have resubmitted the paperwork and waited another 2 months, but what’s the point?) We hope that the leg lift means she can stay in the wheel chair a bit longer if she has the option to "lie down" in the chair. (Carl’s mom died earlier this year and left a little money to Carl and his brother. Carl, being the generous man that he is, decided that he could easily afford to help my sister get this final, much desired feature. So it is Carl, not I, that deserves the credit. But you know after living together nearly 15 years, proximity counts for something.)
So as of today, Lori is still spending the majority of her day in bed. Even with the new wheelchair, which we expect to arrive next week, she’ll still have to take it easy in hopes that the 2nd pressure ulcer will heal. Since the doctor does not want to operate, Vin and Lori are planning to get a second opinion just to make sure. So we do not know when the rehab continues but we do know it is very important that it happen soon. Days after the accident (when we were in high research mode), we read that most tetraplegics will recover what they can in the first year and after that it is less likely that they can improve further. I suspect this extended bedrest has already eroded some of the possible function that she might have had.
One other note… despite everything three out of the four kids have made honor roll this year. Adam is the only one who did not, but his grades were still greatly improved over last year. He is also channeling his extra energy through basketball and snowboarding and is turning into the most helpful child around the house. We like to think that his talks with Mom are easing his teenage angst. And we know mom is keeping after the kids about their homework.
And finally, a note on the money raised during the September 8th Benefit. Lori’s friends & coworkers did a great job of organizing and holding the benefit. My guess is that Caribbean Cruise Raffle alone raised at least $8,000 dollars!, Also, I must give credit to the Wishpets owners who not only came through with a large donation of plush toys for game prizes, but also helped make and set up the afternoon games. Lupe even ran the games all afternoon. (Not to mention how patient they were with my flex hours all summer so that I could leave work early enough to get a head start on Boston traffic so that I could get to the hospital in time to help Lori eat dinner.) It was a lot of work to put the fund-raiser together and a lot of fun. But the best part was that it brought in over $17,000 through the various activities and donations. THANK YOU FOR YOUR HELP!
This money has been used to help make payments for the handicap van. Though, in hindsight, we were all quite optimistic about how important this would be in her life, in Lori’s current condition she has only been able to use the van once. We have high hopes for this spring. Lori’s personal goal is to make it to at least one of Adam’s basketball games after her new wheelchair arrives. Heck, I might even make it to the basketball game just to see this feat!
The money has also come in handy for the renovations on the house. We were lucky that Jim, her ex-husband, volunteered to do the work. But there were still plenty of supplies that needed to be purchased to put it all together.
And finally, there are all the extra medical expenses that aren't exactly covered by insurance. You would not believe how many gloves they use! (Though, Lori is trying to get the insurance company to pick up on this expense.) Also, they had to pay out of pocket for the personal care people while they waited for the actual funding to start. (It is one thing to be approved, it is another to see the money.)
And there are lots of other new expenses for the household – just the cost of the electric bill to cover running the special bed (to help prevent pressure sores!) is enough to make one run to the poor farm. And Ensures, even at BJ’s Warehouse run $32/case, which is only a week’s supply when she’s sticking to the ultimate protein program. I could go on, but the point is, there are lots of little things that add up quickly.
When we first raised the money, we had hoped that it would buy something big for Lori – like the bed of her dreams – we quickly learned that anything helpful needs approval and time… and a lot more money! Meanwhile, there were the unexpected expenses eating away at the family budget. So, while the money may not have bought anything substantial like we imagined, it has helped in a lot ways that have mattered more. The two younger kids will not be pulled from St. Bernard’s like Vin and Lori originally worried about. And Tyler is still attending MCLA in North Adams as originally planned before the accident. These are the things that matter to Lori and this, in the end, is what keeps her spirits up and will help her to heal and hopefully stay strong as she learns to make the most of her body’s limitations.
As for us, meaning Carl & I (since I’m writing the letter and you are my friends so I’m sure you want to know about ME), our world has been turned upside down. We’ve gone from childless adults to having adopted a whole family. I try to do things with Devon at least once a week. For the first time ever I got to get a child ready for Halloween and help her shop for Christmas presents. I love every minute that I spend with her. But at the same time I feel terrible knowing that these are times my sister is not having with her daughter. (the truth is, I feel sad all the time now.) And I feel closer to Adam than I have in several years – any child that suggests that we go to a Japanese restaurant for lunch is child of my heart! But Lori remains Adam’s confidant, except when it comes to expressing his feelings about the accident. Then he turns to me. Matt is Vin’s son and Vin is finding refuge in him (despite the fighting). I am letting that relationship be. If I sense that Matt needs something else, I’ll be there. And Tyler is a young adult now. He has Jim (his father) as his main confidante. And so, this family has learned to cope and stretch and change to deal with the accident.
I feel a kinship to my sister like I haven’t felt in years. I can’t tell you how many times one of us calls just as the other was about to speed dial. It’s downright scary. And then no one has surprised me more than Carl. When my sister was still in Boston, he went with me twice, sometimes three times a week to see her. His emotional investment in her and her family is nearly has strong as mine. Carl is the one that is always coming up with solutions to help Lori cope better; he’s always doing research. If ever I wondered what a life partner is, I know now. Better yet, I know I have a good one!
I am still working at Wishpets designing stuffed animals, taking their pictures and putting them in catalogs. My business card says that I am Director of Product Development but don’t let the title fool you. I do all the work myself! Actually, I am finally getting help in January and will be training my first employee to take over a portion of my work. I love doing both the photographing and the catalogs, but it leaves me with very little time to devote to the product line. Lupe is trying to move our shipping to the West coast, so I need to backfill her job a bit more than normal. AND, I need to create an online catalog so that we can actually start selling our product on the Internet. That’s going to be FUN. Lupe and I should be going to China again this February or March. We missed our October trip partially because of my sister’s precarious state. Partially because Lupe was trying out our first shipment from the West coast. She’s very brave. She decides to do these things and just does it.
I have also managed to keep MostlyFiction.com alive another year. Though, I’m not sure how much longer I will do it. The only reason I keep hanging on is because of the excellent team of reviewers. I don’t want to make the mistake of letting them go, losing them and then regretting that I disbanded the team.
So these are stats of my life: In 2008, I turn 51 and Carl’s turns 61 (actually he does this at the end of the week). We will celebrate our 15th anniversary of "being together" (since we forgot to get married) in July. MostlyFiction.com is ten years old in February. I will have been at Wishpets five years in April. We have been living in Nashua just over ten years. I still hate living in Nashua.
We are really hoping to land ourselves someplace warm and sunny by the time Carl turns 62. I am optimistic that my sister and her family will have less dependence on us as things take on a new “normal.” Otherwise, it will be a very high overhead if we have to take one wheelchair-bound sister, two brother-in-laws, four children and two dogs… what the heck, I’ll throw in my mom too if she ever decides to start aging! (My mom is healthier than any of us -- she hikes, goes backpacking, snowshoeing, kayaking & regularly attends bluegrass festivals. She does all this with a man only a few years younger than her.. I am very proud of her!)
So tell me what you are up to! I am hoping to hear good things!
love,
Judi
January 1, 2008
**************************************