Tuesday, December 29, 2009

Home Alone

Yesterday marked three weeks since the day Skip was taken off to the hospital in an ambulance. Since then, I've been living here at home with no other humans, just the two pups to keep me company.

It's weird being here alone. And, it really is alone as the parade of people coming and going from the house has all but stopped since they were all here (save one) because of her health and care needs.

At first the dogs were very unsettled. They seemed pensive, as if waiting for Skip to reappear. The first few nights at bedtime they displayed the most confusion. Sally normally sleeps on Skip's legs, so she was really discombobulated, Ruby eventually settled into her normal spot at the head of the bed, between my pillows and Skip's.

I buy almost no food; I hardly ever cooked when Skip was here, now I have even less reason to do so. I need coffee, milk and cereal for the morning. I have been making vegie rollups for a late lunch. For dinner, it's either takeout coming home from the hospital or a snack when I get home.

The house is really, really quiet. In addition to the lack of people coming and going, there TV is hardly ever on. Skip always has the TV on, but I love to have it off. I've been watching football. And, I started watching a TV series called Criminal Minds that we'd never seen before. Other than that, nice and quiet.

I have few conflicts between caregiving demands and the rest of life here at home. I make a few calls to follow up on things with the rehab providers and to speak with Skip. Other than that, I never have to find a way to shoehorn everything into the day.

I'm not taking Ibuprofen anymore. Even though we have a lift system in the bedroom and bathroom that keeps me from having to lift Skip for transfers, I realize I still do a lot of moving Skip around when she's here. You know, for all those tasks of daily living where she needs my assistance. Not doing any of that now, of course, so my creaky shoulders aren't barking at me throughout the day. Now, they only remind me that they're screwed up when I get dressed.

The biggest difference of all is the time out of the house. Working from home, with Skip here, I was leaving the house only 2-3 times a week. It was primarily to run errands or go to Cape Cod to visit my parents every other week. Now, I have to put on clothes suitable for going out, put the pups in their crate and head out to Skip's hospital every day. Of all the changes prompted from Skip's stay in rehab, this is the best one for me. I was becoming a bit of a hermit, preferring not to leave the house if at all possible. It's good to be back out in the world more.

When Skip comes home (currently projected for January 14th), the dogs will first bark when they see her come out of the garage door on her way towards the house. Then, they will whine and jump all over her. They will be ecstatic to have her home. I will need to stock up on groceries. The TV will go on and the negotiations over what to watch will begin. I will again be balancing all the demands on me to satisfy all the needs of work, Skip and maintaining a household. After a few days, the Ibuprofen bottle will be back out on the bathroom counter. I can't wait!

Friday, December 25, 2009

Christmas Began at 2am

What is it with 2am at Skip's rehab? Again the phone rang last night at 2am. Again, her blood pressure was low and they wanted to send her to an acute hospital ER. I tried to stop the madness, inquiring about hydration to get the pressure back up. They claimed they'd hydrated her and it hadn't brought the BP up to an acceptable level.

When I hung up the phone, I lay back in bed and started to consider the consequences of an ER run on Christmas morning. Figured this would lead to another admission and changes to some plans set up for the day. While I was contemplating who would need to be called as a result (though at a normal, human hour, to be sure!), the phone rang again. This time, it was the nursing supervisor informing me that Skip's BP was back up and the ER trip could be avoided. I was, if that seems possible, even more annoyed with this call than the previous one. In 15 minutes the situation righted itself and suddenly the drama was over? Feedback about this will be provided on Monday morning to Skip's doc and her case manager. There needs to be better management of hydration. Clearly, the reactive approach taken coming out of last weekend's debacle isn't sufficient. Proactive hydration via IV will be necessary.

Wound up, I couldn't fall back to sleep, so sat up for a bit. Finally went back to bed and slept until 8.

The original plans, thankfully, could stay in place. Our friends D&D took great care of us today by preparing a wonderful dinner, all plated for us, that I picked up at 1 to take to Skip. They also watched the dogs while I was at the rehab hospital. My brother and his family stopped in for a visit. I was so pleased they came by; it meant a lot to Skip and me that they did. The dinner was great. It was the best I've seen Skip eat since going into the hospital on December 7th.

I stayed with Skip until the early evening. After dinner she was drowsy and actually fell asleep twice. I chalked this up to poor sleep the night before. After picking the pups up from D&D's, I headed home for a quiet evening. With Skip in the hospital, I am able to watch all the football, college and pro, I'd ever want to see. Tonight's NFL game was a super snoozer, though.

Merry Christmas, Skip! And, Merry Christmas to you.

Thursday, December 24, 2009

Christmas Eve

When I was a kid, every Christmas Eve we traveled the ~20 miles into Boston/Cambridge and had dinner at the home of my aunt and uncle. They were my father's oldest brother and his wife, both doctors with no children. For many years, they lived in Cambridge in a house near Harvard Square, with my aunt's sister and father also residing there. The house wasn't kid friendly, the food was extremely esoteric, including goose stuffed with oysters and chestnuts and a capon, and I had very mixed feelings about the event. Parts of it I enjoyed, such as the other friends and family members from around the world who joined the festivities, that I'd never have met otherwise. Other parts I dreaded, such as the part of the evening where we had to sit through my aunt and uncle opening every gift they received for Christmas (their tradition was to open presents Christmas Eve rather than Christmas morning).

When I hit my early 20s, I purposely started entertaining with friends on Christmas Eve to continue the tradition of a celebration that night, but one that would be more to my liking. During our years of apartment living in Boston and surrounding cities, Skip and I entertained a lot and liked having our home be a gathering place for friends.

When we moved into what had once been my parents' house in the suburbs of Boston, we continued with our Christmas Eve dinners. Over the last handful of years, with the increasing caregiving load making entertaining here more difficult, we began having the party at the home of friends, but I still prepared a lot of the dishes, including the centerpiece ... a butterflied leg of lamb, marinated in a Julia Child recipe my mother turned me on to 30 years ago, then grilled.

Christmas Eve is a party night in my world. But not tonight. I saw Skip earlier today, but had to come home in the early evening to free the pups from their crate. Tonight, my Skip is alone resting in her rehab hospital room and I'm chillin' on the couch with the pups by my side. This is our 29th Christmas Eve together and the first we've spent apart. As Skip would say, "it's just not right!" (I wish you could hear her say it in her wonderful Boston accent.)

Merry Christmas, Skip! And, Merry Christmas to you!

Monday, December 21, 2009

Yep, I'm Human

I hate to admit it, but I am human. This was brought home to me yesterday as I experienced a temporary meltdown.

I have been Superwoman for many years. I did it all. Managed a series of demanding consulting jobs over the last 25 years that frequently involved long days and lots of business travel. Helped Skip through 20+ years of progressive MS, figuring out new ways to deal with each new symptom that emerged, solving ever more significant problems. Became a full-time caregiver as her ability to handle the tasks of daily living fell away. I used to have a social and volunteer life as well. We used to entertain here and there, with Christmas Eve's special dinner of butterflied leg of lamb, scalloped potatoes and sauteed red cabbage my personal favorite (all of which I prepared). We were actively involved in the local Unitarian Universalist congregation for a while, I even served on the board for 3 years. We used to take vacations to distant places twice a year. And, I loved the planning of those vacations almost as much as taking them.

I was feeling pretty tapped out before Skip went into the hospital two weeks ago. The Superwoman cape was getting quite tattered, showing its age. The demands of caring for Skip have basically crowded out all the non-essential stuff and I've been feeling pretty careworn. The wound care, which involved daily visits from nurses, feelings of frustration and fear and additional effort, were piling on too much and I could feel the strain. With all this, though, Skip was at home and we had control over our daily lives and routines.

Now we're in a whole new world, where control is gone. I am no longer hands-on for Skip's care. Instead, I must stand by and watch as things are done for her. Sometimes I think a great job is being done; sometimes, not so much. And, other people can decide to send her off to the hospital at 2 in the morning when all she needs is some hydration (that's really what the problem was). How come I know that the special bed she's on can cause dehydration and the folks who are supposed to care for her in rehab don't so they don't take countermeasures such as daily hydration IVs?

Okay, so I'm not Superwoman. Never really was, of course, but I pulled off the impersonation for a very long time. Now that I'm human, I admit the frailty of humanness. But, can I learn to ask for the help we humans all need?

Sunday, December 20, 2009

2am Call

I hate it when the phone rings after about 9:30pm. To me, 9 is pretty much the latest time a purely social call can be placed to a friend. Late night calls in our house have all been about bad things. The ones I recall are all related to the impending deaths of both of Skip's parents and one of her brothers.

The phone rang at 2am last night. It was the rehab hospital letting me know Skip's blood pressure was very low and they were sending her to the emergency room. I asked if she was going back to the ER at the hospital she'd been transferred from. The answer was no as we were in the middle of a blizzard and they wanted to transfer her to the closest ER to cut down on distance travelled.

I lay in bed trying to decide what to do next. True, it was snowing and I very much hate to drive in snow. It looked like only about 3" had fallen by then, but it was projected we'd get snow all night and until about noon. If I managed to get to the hospital in one piece and stay with Skip, I'd be completely wiped out. I have a bunch of work that I'm behind on that I planned to tackle today ... how well could I accomplish that if I was sleep deprived and emotionally drained from a vigil in the ER?

I tried to sleep, but couldn't. Eventually, I got up and called the ER she went to. I spoke to her nurse. She'd only been there briefly, but her blood pressure was higher than at the rehab and she was awake and mentally clear. The nurse said they were at the very beginning of their assessment and suggested I call back in an hour. I went to bed and immediately fell asleep, waking up 3 hours later.

Before getting out of bed, I called back to the ER and spoke directly to Skip. She told me they were admitting her overnight. She was dehydrated. They were testing her for c diff (please, let this test continue to return negative results). Her butt was hurting as she'd been lying on a gurney without being turned for hours. They were trying to locate a good bed for her as an inpatient. She didn't want to be admitted, she wanted to go back to the rehab hospital where she felt they'd be able to care for her wound better.

I then spoke with her nurse to relay Skip's concerns and request to go back to rehab. (I guess there's nothing like a real hospital to make a rehab setting more palatable!) The nurse outlined some reasons why an acute care hospital made more sense for an overnight stay and also mentioned the concern with transferring her via ambulance with the roads in such bad shape. Since it was clear to me Skip was bound for a night in the hospital, I tried to enlist the nurse as an advocate on Skip's behalf (since I couldn't be there in person). We spoke about the need for a bed to help her wound and the troubles she'd had in her previous stay at that hospital 5 years ago.

Thirty minutes later, Skip called back to say she was on her way to her room. I spoke briefly with the nurse who indicated the steps they had taken and were taking to handle Skip's special needs. When the snow has stopped, I expect I'll get in a visit as the roads will be safer.

With this crisis passed, now I'm beginning to worry about finances for the first time. Medicare has a per-admission inpatient deductible of about $1,000. One admission wasn't a fun expense to look forward to, but manageable. Does each of these new hospital stays count as a separate admission? If so, we're at $3,000 and counting. I've got some research to do. (UPDATE as of 12:20pm: the inpatient deductible is charged once per "benefit period." A benefit period begins when admitted to a hospital or skilled nursing facility and ends when there's been 60 days not in a hospital. So, all 3 admissions to hospitals and rehab have occurred within this one benefit period. Sounds like just one inpatient admission deductible will be due. Phew.)

Friday, December 18, 2009

Space Age Bed

Yesterday afternoon, I met Skip at the Wound Care Center for a visit with her surgeon (she was transferred via ambulance from rehab). The surgeon looked at the wound, did a little cleanup, and declared that it looked really good. She doesn't have to see him again for two weeks (New Years Eve day).

When I met her back at her room at the rehab hospital, a new bed had arrived. It's called a Clinitron Rite-Hite (more info here. I tried to find a picture that I could post, but I couldn't pull one from the brochure at the site my link will take you to.) The top half of the bed, where your back will rest, is fairly conventional looking. From the small of the back down, it's a whole new animal. A permieter of inflated air gives the bed shape. Inside that wall of air is a sack of sealed silicone beads that continuously move around, creating a support surface that's like liquid. The marketing stuff calls it "fluidized air."

There's no need to turn someone lying in a bed like this. The movement of the silicone beads handles everything so pressure is offloaded continuously. It was very cool to watch the bed at work, with Skip and the bed's surface moving a tiny bit all the time.

There might be one issue with this bed. Apparently, it's heated to about 82 degrees Fahrenheit, so it doesn't always work out for individuals with MS, who can really feel the effects of heat. Skip did not mention any feelings of discomfort from overheating during the 2 hours I was with her yesterday evening (imagine Cranky with fingers crossed).

This bed sounds like a wonder. The brochure I read about it states that outcomes are much better on this kind of bed than an air bed. For a particular wound size, the healing time in an air bed was 70 WEEKS. On the Clinitron, it was 15 WEEKS, and improvement of over four times.

Rental cost is $85 per day. This is not the bed that's been ordered for us as a rental for when Skip comes home. If she tolerates the warmth of it and it seems to be working out, I'm going to see if we can change to this bed for home. The Hill-Rom website shows a home version.

Thursday, December 17, 2009

Hopeful Birthday

Yesterday was Skip's 54th birthday. It was also her first full day in rehab. On Tuesday afternoon, she was transferred to an acute rehab hospital about 30 minutes from our home. Apparently, acute rehab hospitals are set up to handle patients with both significant medical issues and rehab needs. She has settled in well to a large, single room. The place is clean, the staff is good and the food is better than at the hospital.

So far so good, from my perspective. Yesterday was a very busy day. I took it as a vacation day, so spent most of the afternoon and the early evening with Skip. Hardly 15 minutes went by without someone else coming in. In particular, I met her attending physician, the physician assistant that will do the day to day medical stuff, her occupational therapist and the hospital's social worker.

The rehab folks are very much about getting people up and about, about helping them regain lost functionality and finding new tools for independence. I am delighted with this perspective and think it will be valuable for Skip since she's been losing her arm and hand strength. Maybe in addition to helping heal the wound and kill the infection, she'll come out of this even better than when she first developed the wound.

She'll definitely be in rehab for Christmas, so I'm planning to bring in dinner that day for her. It won't be the best place to eat Christmas dinner, but we'll be together, which is the most important thing.

Tuesday, December 15, 2009

I am Consumed

I am so caught up in Skip's seizure, wound, surgery, hospitalization and imminent transfer to rehab that it's easy to forget the rest of the world is moving along. I see the Red Sox missed out on a couple of great free agent pitchers. The financial markets seem to be holding up well at year-end. Obama is following his predecessor in a misguided troop expansion in Afghanistan (at least, I assume it's misguided, I haven't paid enough attention to really know). Christmas tree lights are up all over and other folks are worried about completing their Christmas shopping, wrapping gifts and getting their family visits firmed up.

Someday I'll lift my head up to look around at the rest of the world, but right now, dealing with the overwhelming health issues (oh, and trying to get my paying job done) are about all, in fact more than, I can handle right now.

[end of whine, but still overwhelmed]

Sunday, December 13, 2009

I'm Skip's Wife

Quick update: Skip is truly now into the long, slow recovery phase. Truly, the crisis has passed. Phew! Yesterday, 6 different friends stopped by for a visit with Skip during the afternoon, which was very welcome. We've been getting a lot of love and care through emails, calls and this blog, but there's nothing like a hug with real arms and a chance to be surrounded by friends in the flesh to make you feel loved and supported.

In September, I wrote this piece "Do We Have to Get Divorced?" because I'd found out that the premium for state-sponsored health care was huge if my income was factored in but zero or close to it if only Skip's income was used. For disabled people with this coverage, 40 hours a week of home health aides is included, which made the coverage very attractive, though not so much at the married premium. Since we were doing okay at the time with the amount of aide support we had (the intrepid MW), I left things as they were and we remained married.

With Skip's stay in the hospital, I am so glad we did. I know we'd be treated with respect as a couple even if our status was "partners." However, it is wonderful knowing that I am legally afforded the status of next of kin in the healthcare setting. And, it gives me a thrill every time I introduce myself to yet another nurse, aide or doctor as Skip's "wife." I feel I'm doing my part to help the heterosexual world grow accustomed to knowing people who have now entered into a same-sex legal marriage here in Massachusetts.

As an aside, I had a cup of coffee and a chat in the hospital cafe with one couple who had stopped by to visit with Skip. They, too, are married. We got into a brief conversation about the terms we use to describe ourselves in relation to our spouse. They use "spouse" because to them, the term "wife" carries with it lots of negative connotations because of the historical (and current) subservient relationship many wives have to their husbands. I said I use "wife" most of the time because, in its purest sense, wife is the term given to a female person in a marriage. Calling myself a wife is also a way for me to "take back" some of the bad connotation and restore it to its purest meaning. This is similar to how I feel about words like "fat." For many large people, they shy away from the term fat because it's so loaded with bad meaning. For me, I describe myself as fat purely as a descriptive term, rather than always use some kind of euphemism like "large" or "full-figured." [end soapbox]

I'll be off soon for the first of two visits to see my Skip today. Looking forward so much to seeing her.

Saturday, December 12, 2009

Success, Now What?

The surgery was a success, according to the surgeon. He accomplished what he wanted, to clean out the "goop," his technical term, from the wound and then attach the wound vac. He also took cultures so they can re-evaluate the cooties (my technical term) that are infecting wound and bone to determine if any adjustment of antiobiotics is required.

From the surgeon's perspective, his need to have Skip in the hospital ends following his first change of the wound vac dressing on Monday afternoon. The neurologist has determined her seizure was most likely a one-time event because of the results from the CT scan and EEG, so he has indicated he won't be following her case any longer at this time. The infectious disease doc stopped by yesterday evening while I was visiting. He wanted to find out more about the allergies Skip has to two antibiotics (discovered during a bout of cellulitis almost 2 years ago) because she showed up at the hospital with MRSA as one of the cooties and vancomycin, a key choice in attacking MERSA, is a problem for her.

(Now where did she pick up MRSA? My only guess is that it was introduced by one of the nurses who came into the house. I know they all take care with the use of gloves and hand washing/disinfecting, but that's the logical conclusion as to its source.)

From an infection perspective, the treatment going forward will be a continuing course of IV antibiotics. The current protocol has her receiving them intravenously four times a day. I found out last week that Medicare does not pay for IV administration by a visiting nurse in the home. As a result, it's being recommended that Skip spend a short time in rehab following her hospital release (tentatively scheduled for Tuesday).

The prospect of rehab has Skip sorely depressed. She wants to come home. She misses me, she misses the pups, she misses her home routines. We miss her too. Personally, though, I think rehab for a short time is a good idea. I can learn to administer an IV but I'd like that to be my responsibility at the tail end of this process, not for the long haul. Also, I'd like to see her get a bit stronger so she can do more on her own with her hands before she's left to her devices at home. Finally, I am hopeful she'll get daily physical therapy at a rehab hospital to help get her on the road of building back up her arms and hands. We have to stop the downward spiral of weakness that she's been in lately (I think this is a result of the infection, not an MS symptom).

I gave her my little pep talk about a rehab stay yesterday evening. However, I know it was largely falling on deaf ears. She will be very unhappy about this prospect until it occurs and, perhaps, during the entire time. I am hopeful she can eventually look at this as a time where she can take advantage of the resources available in rehab rather than as a necessary evil to be tolerated until she can get home.

As a backdrop to all of this, is the unfortunate timing. Her birthday is Wednesday and Christmas, normally her favorite time of year, is in less than 2 weeks. It will be a bitter, bitter day for her if Christmas finds her in rehab.

I'm sad for my Skip.

Friday, December 11, 2009

Surgery Today

As I write this, it's 7:05am ET and Skip is scheduled for surgery at 7:30. Her surgeon estimated it would last about an hour, then she'd need an hour or so in the recovery room. I'm estimating she'll head back up to her room mid-morning, and I plan to join her then.

I had figured it was a bad use of my limited time away from the dogs and work to be at the hospital during the surgery and initial recovery, when I couldn't be any use to Skip for support. However, I am doing a bit of second-guessing of myself. Despite that, I still think the plan is the best use of a key limited resource: me.

Her surgeon called me yesterday to let me know there is infection in the bone on the side where her wound is, as was reported to me by the internist. He said the other side isn't infected, though. Instead, what's there is deep tissue injury which, if not dealt with, would lead to another pressure sore. The air flow mattress then will have two purposes: help heal the existing wound and keep this incipient one from blossoming into another wound.

I'm thinking hopeful thoughts about this surgery. This is a very important step as it will clear away the necrotic tissue in the wound and create a good bed for healing. They'll attach the wound vac when the cleanup is done to supercharge that healing.

I worry about my Skip, though.

Thursday, December 10, 2009

Bad to the Bone

Yesterday morning, I spoke with the hospitalist (an internist) working on Skip's case. She said the MRI results indicated bone infection (osteomyelitis), and her take on it was that it was very significant. Infection was showing on both sides of her hip. She said I'd need to speak to Skip's surgeon about it in regards to treatment, but she thought the treatment would be protracted and significant, indicating that surgery would likely be used to help clear up the abcesses and dead bone tissue.

Oy! I must confess, this was the most worrisome news to date and prompted a fairly significant reaction in me. And, since it's really the surgeon's assessment and recommendation on course of action that matters in this situation, I felt wound up with the news without any way to put it into perspective as to how we'd get it fixed.

I called the surgeon's office and set up a call with him a few hours later. He had not reviewed the MRI results but said he wasn't surprised that bone infection was present after what he'd seen of Skip's wound on Monday in the ER. He said it had taken a definite turn for the worse. He painted a different picture of the treatment than the internist, indicating the infection would most likely be treated with antibiotics and this could be done at home. Of course, I took this with a grain of salt because he hasn't yet reviewed the MRI results.

I got to the hospital around 4. The surgeon came in shortly thereafter (still not having seen the MRI) and did a short debriding session. He is tentatively planning surgery for Friday. I am expecting he'll have additional insights to offer today following his review of the MRI.

In other news, Skip had a special IV line set up (PICC) that can be used for an extended period to handle her daily antibiotic regimen. She got a unit of red blood cells transfused while I was visiting and antibiotics (Zosyn) were next to be administered.

Skip isn't happy to be in the hospital, of course, but she seemed to be in pretty good spirits yesterday. She's still very weak, so I fed her dinner during my visit. I've brought in some books to read to her, and am keeping her up to date on postings here, especially comments, as she's really appreciating them. (I am, too.)

Tuesday, December 8, 2009

All Seized Up

During the night on Sunday, Skip was mentally confused and kept me awake from 2-4 with continuous requests to adjust her position and remove the packing from her wound because it was irritating her. This was totally out of character; honestly, she hardly ever wakes me up during the night for anything (which is lucky because I typically don't react well to such wake-ups). I got up to begin work around 6 or so and waited until about 9:30 to go in to start her day with her morning pills so she could catch up on the sleep she missed.

I went in with her pills. When she awoke she stated, "Mary full of grace." What!?! This from a lapsed Catholic girl who has never been to a Mass of any sort in the 28 years I've known her except for funeral or wedding masses. I asked her what she was talking about and she looked up at me with her eyes opened as wide as they could, pupils roving wildly around (imagine an old movie sterotypical representation of a crazy person). Her crazy look and out of control pupils scared the bejesus out of me.

Then, her body started to spasm uncontrollably. At first, I thought it was her leg spasticity being a bit extreme because she hadn't yet had her morning pills. Then, I realized the spasming was consuming her entire body. Even the muscles beside her eyes were spasming. She began to drool. I had never seen such a thing happen to Skip or anyone else.

In a minute or two, the spasming stopped. There she lay, eyes partially open, breathing deeply, emitting a snorty, snoring sound, drooling continuing. I called out to her to try and rouse her. No response. I tried not to panic, but really, really horrible thoughts cruised swiftly through my brain.

This was way beyond something I could handle. I called 911 and described what was happening. Five or six EMTs arrived. They hooked her up with an oxygen mask, took her blood sugar, which was low but not alarmingly so, and assessed the situation. They transferred her to a stretcher and took her off to the emergency room.

While waiting for the EMTs, I called the office of her surgeon who was scheduled to debride her wound the next day and spoke with his office admin. He called me back while the EMTs were here, so he got the lowdown.

I showered, sent an email out to colleagues letting them know what happened and that I wouldn't be working and called the ER to let them know I was on the way in case Skip woke up and was freaked out that I wasn't there.

When I showed up in the ER, they brought me right into her room. She was settled in on a gurney, with an IV running. She said hi and smiled, seeming very unconcerned. Not at all the Skip I expected to find. She was just barely with it but was only marginally aware that she wasn't hitting on all cylinders.

A bunch of tests were performed, including a CT scan, chest X-ray and an EKG. Many vials of blood were drawn. This hospital uses MDs called "hospitalists," and the hospitalist handling the admissions for Monday stopped by to get more info from me on the seizure and to update us on what the test showed. Fortunately, nothing showed up of concern on the CT scan. The blood work showed electrolytes out of whack. She clearly had an infection. So, the plan was to admit her and get everything stabilized so the surgery could occur.

Skip's surgeon did stop by for a quick visit including some wound cleanup and the wound nurse came in twice, first to pack and bandage the wound and then help out the surgeon and then rebandage after his work.  She also organized the special mattress for Skip's hospital room.

By mid-afternoon, I knew Skip was really coming back. How could I tell? Because she was becoming a fusspot! Her genial good spirits receded as her awareness returned. At times we joke about her being a bit of the "princess and the pea," because she can be very persnickety about her comfort. When a bit of the princess and the pea emerged, as she fussed about her situation, I knew my Skip was mentally on the mend.

Around 5pm, we got up to the hospital room. Over the next hour or so, the staff got Skip settled in and oriented.

I left around 6 and went home to relax and get the pups out of their pen. It was very different being home alone. The pups and I headed off to bed fairly early and I slept soundly without interruptions (yay!).

All in all, I'm impressed with the care Skip is getting. The surgeon, hospitalist and an infectious disease MD are all working in a coordinated way to bring Skip back to health. The nursing and support staff in the ER and the ward are very professional while still being warm and caring. It's very comforting knowing that she's in such competent hands.

I'm running out of steam. So, tomorrow, I'll provide more updates on what happened on Tuesday and what is likely to happen in the next few days.

Quick Update - Surgery on Hold

Just a quick update as I have to head over to the hospital to visit Skip. Yesterday morning, she had a seizure and I called 911 so she could be rushed over to the ER of the hospital where the surgery is to occur. Doesn't look like anything wrong in her brain such as a tumor, just bad stuff accumulating to send her into the seizure. Stuff like cellulitis (infection) around the wound, electrolytes out of whack, low red blood count.

So, she's set up at the hospital with the special mattress to help her circulation for wound healing. She got IV antibiotics last night. Is getting a transfusion of one or two units today. Basically, getting her stable so they can proceed with the surgery to do a major debriding of her wound.

In the meantime, her surgeon will be visiting and doing minor debriding every day.

This evening, I will provide additional updates and give more info on the seizure itself ... a very harrowing experience. Think good thoughts about us!

Saturday, December 5, 2009

"Sorry For Your Troubles"

When Skip's father died, and we spent a lot of time at wakes and his funeral, I heard a lot of friends and family saying to Skip and her siblings, "sorry for your troubles," as part of their condolences. We picked up on that phrase and use it here at home as an acknowledgement of rough times.

Well, if there ever was a time to acknowledge the roughness, this is it. Skip's in a bad way. Her wound is getting worse and will require major changes in her life to get it to heal.

On Tuesday, Skip is going in for day surgery (late in the day) to have the wound cleaned up (debrided) in a more controlled environment than the clinic setting. The plastic surgeon should be able to get all the junk removed and set up the wound for healing. At that time, they'll reattach the wound vac.

She'll spend at least a few days in the hospital. Actual duration is still TBD, but I am hopeful that we can get the special bed that's been ordered delivered to our home ASAP so she can spend a short time in the hospital and then come right home to the bed. (I'll provide more details on the special mattress that promotes circulation when I get the official name of it and can look it up on the web.)

My experience with hospitals and their ability to handle the special needs of the handicapped is poor. Skip is staying at a different hospital than the one she's been in twice before. Here, I am trying my best to get her needs identified in advance in the hope that they'll be prepared.

The only other time Skip had day surgery, there was an expectation that I'd get her changed into a gown and set up on a gurney and NO ONE helped me! The surgeon's office contacted the patient advocate at the hospital where he's affiliated and I spoke with her yesterday. She is going to work with 1) surgical day care so they're prepared to provide me with assistance, 2) the in-hospital wound nurse so she can order a special mattress for Skip and 3) will prep the staff on the floor where Skip stays so they'll understand her special needs. She also reinforced that I should feel free to call her if any issues arise.

This is the lowest I've ever seen Skip. Her life has altered for the worse ... she's not out of bed for long each day. She is in constant pain. She's stressed out and that is causing her to be very weak, so often her arms and hands barely function. She anticipates that she'll be lying in bed for 6 months healing and this will have a permanently debilitating effect on her, so she'll slide downhill quickly as far as upper body strength and arm/hand functionality (I, too, worry about this). Yep, things are pretty grim in Skip's world view.

I was pretty damned cranky about things for a while, but just recently a switch clicked in my brain and I've emerged from the worst of that so I am now in a better place to provide emotional support to Skip. I hope I can keep the switch clicked. I've always been there for the physical care, but sometimes I'm just not available for the emotional care when I'm in my own dark and dismal place.

Think good thoughts about Skip and her wound on Tuesday. Wish her luck for successful surgery and her embarkation onto a healthy recovery. Oh, and wish me luck for the strength to be supportive and wonderful to Skip now in her time of greatest need.