The First Non-Wound Day

Five and a half weeks ago was Skip's flap surgery. She's been in bed, not sitting up, since then. Yesterday, she went back to Brigham and Women's Hospital to have the stitches out. We rode together in an ambulance so she wouldn't have to sit up en route to her appointment.

Imagine, riding in the stretcher for the brief distance between our front door to the ambulance was Skip's first fresh air since January 13th! I'm glad it was a cool, crisp day with no rain or inclement weather to ruin the moment.

At BWH's Wound Center, the ambulance drivers rolled her right into the examining room. After a short wait, two nurses came in to remove the stitches. The lead nurse was quite pleased to see how well the incision had healed. She mentioned that the last two flap incisions they'd seen had both been failed operations, so she was particularly happy about Skip's great outcome.

Turns out, though, that Skip's not out of the woods yet. She is only supposed to sit in short bursts, increasing a bit every day, until after a month she can sit up for 2 hours at a time. How naive I was ... I thought she'd be back spending a good amount of time in her chair right out of the gate. She's decided to do her sitting in bed for the next few days at least, postponing her first wheelchair sit for now.

In reality, without my realizing it, we've embarked on a new phase of life. Skip really shouldn't spend hours and hours at a time sitting in her wheelchair, even when taking advantage of its tilt and recline functions to change the pressure points. (See below for photo of her chair's capabilities, taken when she got it about 3 years ago.) We'll have to see how that changes things for us going forward. Here's hoping we still get those trips to Fenway and further afield, like Las Vegas and Washington, DC.

Bottom line, though, is that Skip has no pressure sore right now for the first time in a very long time. That is a most wonderful thing and not to be downplayed at all. Woo hoo!

Super Duper News

Skip's infectious disease doc called yesterday. He was checking in on the status of her PICC line as she'd had to have a special flush of it yesterday. The flush worked well and the flow was back to where it should be.

While we had him on the phone, Skip asked if the cultures of her bone scrapings were done growing. The doc was waiting for them to determine the severity of the cooties and thus the length of the IV antibiotics administration. Well, the results were finally in, and the cooties aren't too extreme so she only needs a total of 2 weeks of antibiotics! Woo hoo! We're already into the second week of the IV process, so all this will come to an end soon. We've got a good routine going now, but I certainly won't miss it when the antibiotics are done.

The next question is ... how is the PICC line removed? Can it be done in the home? The insertion needs to be done in a fairly sterile environment with access to Xray or ultrasound equipment to check its position in the body. I suspect the removal is much simpler. Just pull!

Home Again, Home Again, Jiggity Jig

So the Skipster is home. The ambulance pulled in the driveway about 8 o'clock last night. We got her all settled into bed and after the EMT's left, I let the pups out of the crate to run in and love her up. They were delighted to see her.

While she was in the hospital, they started her on her a twice daily IV antibiotic regimen. But she's going to need 2-4 weeks of the antibiotics. She could have gone to rehab and had it done there but we've been that route and we'd both rather not have her go through that again. Instead, we opted for home infusion. Foolishly, Medicare doesn't pay for home infusion, but they will pay the freight for a patient to stay in a hospital or rehab setting to get the IV. Fortunately, Skip's Medigap coverage covers a portion of the IV antibiotic medicine, so we won't have to pay too much to save Medicare thousands of dollars for the rehab stay.

Today was a VERY full day and that story merits its own post. I'll share that tomorrow. In the meantime, I'm just waiting for Skip's evening infusion to finish so I can go to sleep.

Still Home Alone

Just a quick update as I've got to run out shortly...

The docs decided to keep Skip in the hospital while they had some results, but wanted to get more growth in the culture. They started her yesterday on twice a day IV antibiotics. She had a mild allergic reaction to this antibiotic in 2007, so they're giving her Benadryl beforehand as they really want to use this particular one.

She called this morning and before she even gave me an update, I knew from her voice that she wasn't happy. The resident had come in this morning (trailing along with him 5 students) and told her that the culture is growing very slowly and so she likely would not get out today.

It's funny how quickly routines can develop. Since her first full day in the hospital, I've spent 3 or so hours with her each day from late afternoon into the early evening. While there, we look over the menu and order her dinner. This way, I can feed her. Since she's lying partially to one side, she can't get in a position where she can feed herself. Yesterday, she wasn't feeling that great and was practically falling asleep most of the time I was there. I think it's mostly a combo of the Benadryl and antibiotics that are making her feel crappy. So, we held hands and I watched tv while she drooped.

Good News. Bad News. Cautiously Optimistic News.

Good News. Skip's surgery went very well. In fact, they didn't have to grab donor flesh from her thigh to fill in the gap where the scar tissue had been. Not sure how they filled it in, but there's only one incision so no second site to cause pain, worry about, and have to heal.

Bad News. On Saturday afternoon when I was visiting, an infectious disease doctor came in. Not a good sign; they don't just visit to make nice-nice. Turns out the small wound actually had a tunnel that had gone down to bone and, while open to the world, the bone had gotten infected. We were glad the infection had been found so it could be treated rather than increase unchecked, but the news filled us with dread. After all, when Skip had the monster pressure sore two years ago, the bone infection she had then landed her in acute rehab for 28 days of twice daily IV antibiotics. Further, my understanding is that Medicare will not pay for IV administration in the home. Instead, you have to be in the hospital or rehab to receive it (to me, this makes no sense. It has to be much cheaper to have a visiting nurse come and administer the IV in the home rather than pay for all the trappings of a hospital or rehab setting.).

We were told that the bacteria was being cultured and, until the culture yielded results, they didn't know what the right next steps should be. It could be as easy as treatment with an oral antibiotic or as bad as IV antibiotics.

The potential of further hospitalization to treat the infection sent Skip into a tailspin. The plastic surgery residents told her she'd need to stay in the hospital until the results were known and a game plan devised. She was quite depressed while we waited 24-48 hour for further word of the culture results. The infectious disease doc stopped by yesterday afternoon while I was visiting to let us know the culture still hadn't yielded results.

Cautiously Optimistic News. This morning, Skip called me and she sounded surprisingly perky. Apparently, one of the plastic surgery residents had stopped by to tell her that the culture was in and it looked like it wasn't a superbad bug and treatment would be oral antibiotics. And, it was possible she could go home today; the release decisions are made around noon, so she'd get an update this afternoon. She was in great spirits as a result. I, for one, want to hear what the infectious disease doc has to say about the infection first, but I am cautiously optimistic for the simplest way to resolve the infection.

We'll know more in a few short hours.

Good News

Skip had her flap surgery yesterday and it went well. A quick recap of the day:

• Got up at 5:15 to get the day going. Aide came at 8:15 to bathe and dress Skip. We left the house at 9:45, right on schedule.
• Arrived at BWH at 10:30. Admitting saw us at 11:30 and then a few minutes later, we went to the pre-op area. They transferred Skip onto a gurney and I got her changed. The pre-op nurse asked a million questions. The OR nurse came in and introduced herself and asked more questions. The residents came in and enthusiastically said "hi." The plastic surgeon came in and marked Skip's right side to make sure the surgery was done there. The anesthesiologist came in and asked the same million questions then started up an IV and took Skip off to surgery at 12:30.
• I went up to the family waiting area. Nice! They gave me a pager like you'd get in a restaurant while waiting for a table. There were carrels with computers for surfing the web, tables for comfortable eating, separate areas with overstuffed chairs, consultation rooms for private meetings with surgeons and, best of all, two separate rooms for tv watching. This left the main waiting room free of the constant tv noise you'd often find in this setting.
• At 1:30, only an hour after Skip was whisked off to the OR, the surgeon called to say everything had gone well. Great!
• But there was still more waiting, as I didn't get to see Skip in recovery until 4pm. She was still a bit sedated, so was quite mellow and sweet when I saw her. I should say here that I'm so glad we live in the times we do because there's no need for us to hide the nature of our relationship in settings like a hospital. I tell everyone that I'm Skip's wife and know that informs folks immediately of our family connection and legal standing in case of important health decisions.
• At 6:30 or 7:00, a bed finally became available and Skip got transferred up to her room. A bit after 7, I knew she was definitely fully with-it because she started to get a bit cranky. They gave her the first bit of pain medication since coming out of surgery and she started to feel better after that.
• She sent me home at 8:30. Wow! It got cold and windy during the day. Looks like we're actually going to have winter here in southern New England after all.

With everything going swimmingly in yesterday's surgery, I expect Skip will come home on Monday. The pups and I will be glad. While it is nice here at home to have some peace and quiet, it'll be good to have Skip home. I know she is getting good care at the hospital, but it's nothing compared to the kind of care and attention she can get here when she's gone past the initial phase of her recovery.

I'll go in to the hospital this afternoon to visit. I expect feeding herself will be a real challenge for Skip, especially as she can't fully lie on her back yet, so we'll order her a good-sized lunch while I'm there and I can help her eat. Unfortunately, I won't be able to stay and watch tonight's Patriots game with her. Watching the game alone just won't be the same; the dogs won't be as responsive to my growls when bad things happen and cheers when it's good. A small price to pay to have Skip's pressure sore cleaned out and on its way to a good healing.

Pre-Op Plans

There's a lot to be accomplished before Skip's surgery since she'll be bedbound for 6 weeks following the procedure. She got a tooth pulled early last week. Then there was the pre-op appointment at Brigham and Women's Hospital on Friday. We followed that up with a BBQ dinner out. She'll be going to her MS clinic next Thursday. She needs to see her neurologist so he can do a write-up for Medicare as part of the request for a new wheelchair.

Fortunately, we also have some socializing to do as well. We typically have dinner with my mother on Saturday nights, so that's where we were last night. My brother, his wife and their oldest daughter also joined us. That was fun. Today, we're getting together with old friends we hardly ever see since they moved away to Cape Cod about 10 years ago. We're meeting halfway between our two homes for dinner. On Thursday, it's on to see another couple that we love very much for dinner. Since they bought a vacation home in Maine a few years back, they're not around much on weekends, so we don't get to see them very often.

For Skip, who only gets out about once a week, this has been quite a whirlwhind. I guess we're getting 6 weeks of outings crammed into 2 weeks.

Some thoughts about the pre-op appointment. The nurse who met with us spent two hours going through everything to prepare for the day before and day of surgery. She was great. Skip and the nurse, Patty, bonded immediately on their Irish background. She was very professional, knew her stuff, knew what was important, but also was very caring and warm. A tech came into her office while we were meeting to draw blood and perform an EKG so we didn't have to wander around to different offices, with a wait at each one.

There is a stark contrast between this hospital and the hospital where Skip had day surgery in 2007. MW (Skip's aide) took her to the pre-op appointment, so I don't know what went on there. But, when we arrived at the day surgery admissions, there was no assistance whatsoever offered to help Skip get into a gurney and ready for the surgery. I had to manhandle her onto the gurney and change her into a johnny without benefit of any hospital staff assistance. This was completely consistent with all our interactions at this hospital. Skip was admitted there in 2004 for kidney stones and there was no one to help the nurse transfer her into the hospital bed following her admission. I had to help get her to bed. Tests -- they never had any device or people to transfer a disabled person from wheelchair to examining table. Patty at BWH told me I wouldn't have to do anything on the day of surgery except to make sure Skip was safe and everything was to our satisfaction. She told me when we checked in for the surgery, the "transfer team" would show up and take care of everything for Skip. How great is that for both her and me?

The Flap

As those who have read my blog for a while know, Skip has been bothered by pressure sores on her butt off and on for the last 2 years. The first one, that lasted from the fall of 2009 until May 2010. It was huge and got so deep it exposed bone, which eventually became infected. That whole horrible scene included 5-1/2 weeks in the hospital and rehab primarily to administer IV antibiotics for the bone infection.

So, once that wound healed up we thought she was done with those troubles. Unfortunately, some months later, a small irritation started up on top of the area on her butt where the monster wound had been. This irritation slowly but surely morphed into a real live small wound that has resisted all attempts to get it to heal. Finally, her wound nurse recommended Skip try out the wound center at Brigham and Women's Hospital (BWH) in Boston. She thought they might recommend flap surgery.

Well, that's just what they did. Apparently, large pressure sores that heal often leave in their wake a lot of scar tissue. The scar tissue makes the whole area more unstable and prone for sores, making it likely that Skip would continue to have them there pretty much continuously.

The surgery would involve removing this scar tissue and replacing it with donor tissue from Skip's thigh. The procedure doesn't take too long, just a few hours. A typical hospital stay following the surgery is 3-4 days. Then, Skip will be transferred home via ambulance (so she doesn't have to sit up) to spend the next 6 weeks in bed. The long bed rest is necessary for proper healing. Only about half of the flap surgeries performed succeed but those who are compliant with their bed rest have much higher success rates.

Not surprisingly, Skip is very nervous about this surgery. I would too, in her shoes. But we're both confident this is the best approach to help her, ideally, live sore-free going forward.

Steady State

Steady state, that's what we're in now. We've got our Skip's-wound-is-small-and-healing-slowly routine settled in. It's a bit like being in limbo. The wound isn't all consuming, but it still shapes a lot of our daily lives.

We have our morning routines and our bedtime routines. We know when the nurses and the aids are coming. Every day, I keep Skip up to date about meetings and other work obligations so she knows my schedule. I know where she'll be.

This isn't our ideal. Skip wants to be up more, she wants to get out more, she wants the pain to go away. She's restless and doesn't feel quite human while spending so much time in bed. We both want to get rid of the hospital bed and buy a new bed that we sleep in together. I'd like to get out more and be a bit more engaged with the outside world. I feel lonely and isolated.

We both know this steady state isn't forever. It's working for now while we get the wound healed. We're counting on this state lasting for months, but not years. We'd both hate for this to be our forever state.

Osteo? Probably No and the Vac is Retired

At the wound clinic visit today (those biweekly visits sure do come around fast), the wound vac was officially retired. The wound looked good following the two-week vac holiday, with no concerning slough buildup, so the vac isn't likely to be required again. As I said before, it was a valuable tool for many months, but we won't miss it.

And, we discussed the osteomyelitis. The x-ray proved inconclusive. Skip doesn't really appear to have any significant evidence of infection, so there's no need to get out the big guns (IV antibiotics) to try and kill off something that might not even exist. The docs will keep an eye on her with her biweekly visits to the wound clinic and the wonderful visiting nurses will be able to be an early warning system with their daily visits for dressing changes.

Driving home after the appointment, it was lovely to see all the buds on the trees. We started spring here in New England with horrible weather, experiencing 10" more rain than normal in March. April has been up and down weather-wise, which is typical, but we're definitely experiencing more mild days now than cold. When we got home, Skip and her aid, MW, spent an hour out on the patio enjoying some cigars.

Vac Be Gone!

The Japanese Maple buds are now transforming to leaves!

We had a successful, though not entirely satisfying, visit to the Wound Clinic today. The tunnel remained at the same depth as on the previous two visits. We confirmed the radiologist had read and commented on Skip's x-rays as if we were looking for evidence of osteoporosis rather than osteomyelitis. A nurse in the clinic will speak with the infectious disease doc to have him request another reading so we can find out if there's anything worrisome in the pictures.

The best part of the visit was the removal of the wound vacuum. We're taking a "vac holiday" that may become a vac retirement. From the plastic surgeon's perspective, the value of the vac has diminished, and it's time to move on to another therapy. Also, Skip's skin around the wound is starting to get irritated from the continuous covering with tegaderm. So, they packed the tunnel with an anti-microbial tape, put some gauze on the outside and it was done. We'll still have a nurse come every other day to change the dressing, but it will be much easier and quicker than the changing of the vacuum's sponges and drape.

Skip is quite pleased that she will no longer have to hear the vacuum gurgling 24 hours a day, as it has been for the last 4 months. (At night, our bedroom is alive with white noise from the vac, the air blower for her mattress and a fan. This is good for me to help drown out some of my tinnitus.) It definitely was a valuable tool in the wound healing process, but we're not sad to see it go.

Back to the Wound Clinic

Last Thursday, the day that Sally died, we canceled our wound clinic appointment. Neither one of us was really up to it. Since Skip's wound has been progressing beautifully, it also seemed to be a very low-risk move.

So, yesterday found us back at the clinic for Skip's rescheduled appointment. Skip's aide, MW, came over about an hour before we left to give me a hand in the final prep to get Skip up and out. (I'm not exactly sure why, but getting Skip out of bed nowadays seems like a much bigger effort than before she was hospitalized. I think it's because it's no longer part of our regular routine and more of a special occasion.) The sling is working very well for the transfer and causes no pain for Skip at all.

At the clinic, once we got Skip settled in on the stretcher, the wound nurse removed all the old dressing and took measurements. While the wound hadn't shrunk as dramatically as in prior visits, the key measurement of length of the tunnel was smaller, so that was good news. The plastic surgeon came in and gave us a warm greeting, he is a very warm and friendly person. Last week, he called to give his condolences about Sally's death and he again brought up it to say how sorry he was. When he looked at Skip's wound, he declared it "superb," so everyone remains quite pleased with the healing progress.

In two weeks, when we return to the clinic, we'll meet with the infectious disease doc who consulted on Skip's osteomyelitis when she was hospitalized. He can determine when to have an MRI to confirm the state of the infection (that is, confirming its eradication!) and check the state of Skip's tissue on the left side of her butt (the MRI that disclosed the bone infection also showed damage to her left buttock tissue, a precursor to a wound on that side that has never developed).

Unlike our last trip to the clinic, the weather yesterday was mild for February, above freezing and in the 40s F, so no issue with iciness. Skip felt good being out and about. During our unusually long wait before being seen, Skip remarked how much better she felt being up and out in the world. Perhaps our next outing can be a visit to her hairdresser to get her haircut, which is about 6 weeks overdue. While we were sitting there, I joked that I should get a Flowbee to give her a haircut. On my blackberry, I googled Flowbee, and there it was, on its own website, still in existence, even though I haven't seen it advertised on tv in years. Maybe she should just get a buzzcut now while she's spending most of her time in bed. That might be fun!

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.)

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.

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.

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.

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.)

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!

"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.