Ode To Anna Nicole

Anna Nicole is gone

And Sandy finally has the chance

To east solid foods

And do the happy dance!

She's Back In! Now She's Home Again!

No kidding, Sandy had to be admitted again on Friday. She made it home Saturday afternoon, but what a nuisance it was.

We had an appointment with Dr. Cameron on Friday, which confirmed Sandy’s terrific progress. He removed the drain from her back and the fifty-odd staples that were used to hold the incision together. I think Sandy was happy to have the staples removed—simply because it felt like progress—but thrilled to have the drain removed. This was the drain that was added nearly a week after her surgery, inserted through her lower back on the right side and behind the liver. Regular imaging had shown a collection of fluid adjacent to the liver, and the drain could easily allow this to resolve itself. It sounds pretty simple, but consider the fact that you then have a tube sticking into the far reaches of your insides, and protruding out through the one part of your body that you can lay on. Adding to the discomfort, the drain tube is also reinforced with a rigid wire that has kind of a hooked end to it to keep it in place. You can imagine her relief to have that one removed.

All seemed to go well during that appointment. Dr. Cameron also allowed Sandy to start to sip very small amounts of clear liquids like chicken broth and jello. She would stay on the TPN/Anna Nicole, but that still felt like a home run…right up until the time the phone rang at home two hours later to alert us that Sandy’s potassium level was elevated.

“We’re sure it’s just a fluke, but would like her to get another blood test.” Off to the ER at GBMC to get another blood test, and so that she could be admitted there if she needed fluids. My impatience with the process there (4 hour wait) and some quick coordinating with Hopkins allowed us to go to the Patient First clinic off Falls Road. Not an ER, and no lines to wait in. Maura (Hopkins Transplant Program’s Nurse Practitioner) coordinated with them by phone to assure that they would take the blood and send it through their lab immediately. Sure enough, her potassium was elevated at 6.5. Ordinarily, anything above 5 is a problem. The concern is that high potassium can cause heart or kidney problems. That is not something we want to invite. The decision was made to admit her back at Hopkins to administer fluids. Downtown we drove. A mere six hours after the mini-adventure began, Sandy was settled back in a room on the transplant floor at Hopkins. And only a couple of hours after that she was given fluids. And that is where Sandy spent her Friday night and part of Saturday.

There is a bit of a bright side to this chapter, too. Because her potassium was high, and Anna Nicole is loaded with potassium, she could not take her Anna Nicole bag on Saturday night. The home infusion service delivered a simple bag of clear fluids for Saturday and Sunday nights, and the rest of her nourishment came from broth, jello, and even a very small bite of pasta last night. Clearly, that was stretching the orders, but she tolerated it very well. The home care nurse will send fluids from the drains to a lab today to be analyzed, and Sandy will take the same clear fluids tonight. If the lab results are good, and the enzymes from the pancreas are sufficiently low, she may be able to begin eating more... fluids. Real fluids…real food type stuff…and not the bag. There is a pretty good chance that they will just reformulate her TPN with less potassium, but keep your fingers crossed.

People wonder, “What’s the plan from here?” The plan is simple: let her heal. She has a hell of a recovery ahead of her, and that will take months. It is likely that Sandy will face another round of chemotherapy as soon as she is strong enough. We have an appointment with the oncology team on April 9th to discuss this in more detail. More chemo won’t be fun, but you just don’t want to leave this up to chance. When you are in a fight, you don’t hit your opponent only a couple of times and then watch and hope that they fall down. You beat them down, over and over, until they are bloodied and no longer have the will to fight. You approach a difficult and rare cancer like this in kind of the same way. Her surgical results are very, very good. More chemo is the insurance, the extra punches that you hope will put and end to this thing once and for all.

Sandy’s next appointment is on Friday. Barring anything dramatic happening over the next few days, I’ll let you know what comes out of that meeting sometime over the weekend.

She's Home!

Nope-- she’s not ready for visitors!

Sandy made it home a little after 4pm yesterday, and we were met almost immediately by a delivery from the home infusion company and Sandy’s home care nurse. The next couple of hours were spent learning all about how to store the formula and bottles of vitamins, mix the vitamins with the TPN (Anna Nicole), how to flush the PICC line and inject it with heprin, how to organize and schedule medications, and so on. If you let it, the volume of information could really make your head spin.

This was the first time we were able to lay out all of her meds—Haley counted 24 pills per day that her mother has to take. Wow. These vary from anti-rejection drugs and steroids, to antifungals, vitamins, and so on…even a stool softener (though Sandy is proud to not take those).

She seemed to sleep pretty well last night, overall. You understand that is relative—she slept pretty well, relative to how she has been sleeping in the hospital. The pump that infuses the TPN actually makes a fair bit of noise, sounding a little like an old 35mm camera clicking off pictures and grinding the negative film slowly to advance it…all night long. God, I hope I get used to that noise quickly. Any time that Sandy has to get up, I have to get up with her to carry her TPN and pump to the bathroom. All the oral medication is making her nauseous, so we spoke with the nurse today about some anti-nausea medication. These were pretty successful for her while going through chemo, so it does not seem to make sense to try to suffer through it now.

The girls decorated the house for Sandy’s arrival. Gerry and Bob, Sandy’s parents, brought her home from the hospital to be greeted by a couple of large clusters of balloons, streamers in the trees and on the portico, and a sign that reads “Welcome Home Sandy!” The sign was made by our neighbor across the street, who also happens to be named Sandy. The girls returned the favor by decorating her front step and light post with the same pink and blue streamers. I have a picture of this spectacle, but Blogger is not allowing me to post pictures for some reason (bug). If you're patient and promise to look beyond the Beverly Hillbillies inspired front door (torn to shreds in last weeks 50+ mph winds), maybe I'll post it later.

Riley was very happy to see Sandy. He greeted her in the front yard, never attempted to jump up, and hung by her side from the time she got home and went upstairs…to the time we finally made him go outside TODAY at 2:15pm! He never ate dinner or breakfast, and refused to leave the room. I don’t think Sandy was at all disappointed to see him cling so closely. He finally went outside when Sandy decided that she would sit out on the deck for a few minutes. It is beautiful and sunny today, a little above 70 degrees, and it is the first meaningful time that Sand has spent outside in a long time. And the dog finally relieved himself...which lasted about two straight minutes.

The Engine is Running

So, it looks like this is going to happen today! The lab results came back negative (that's good- no infections). Barring any last minute issues (and there are always issues), she will be released sometime today. There is a home infusion service that will meet us here at the house this afternoon to get her started. She'll still have the drains and will be fed through the PICC line (Anna Nicole) for a while... more on that later. I'll see if we can get a picture or two today to post. So far, she has refused any pictures.

You can bet that Riley will cry uncontrollably and BB will meow at her for a few minutes before checking herself and saying, "Enough of these niceties--it's all about me." I am sure Sandy will be very happy to see them both.

The big question is, will Sandy beat the girls home from school today?

Homeward Bound?

Well, it still looks like today will be the day. This presumes that all labs that are being run this morning are returned with acceptable results. In particular, they want to see that there is still no evidence of infection (resolved by the antibiotics). Absent any other complications, Sandy will be released sometime this afternoon. That, as we have learned over the last year and a half, can take hours.

I fully expect that the trip home will be a big move for her. I am sure she will be exhausted, but happy to get in her own bed with her own things around her. It is safe to assume that she should not have any visitors today. Also, please be reminded that she cannot have any flowers or plants.

Check back here later today.

Coming Home Monday?

Sandy continues to get stronger each day. Just a week ago, it was a real struggle to walk even a lap around the floor. There were only a couple of brief periods during the day during which she had enough energy to even attempt it. Those periods usually fell in the mid to late morning or early afternoon. By afternoon, she was exhausted and required more pain medication that made her drowsy. Walking late in the day just wasn’t an option a week or even a few days ago.

Since they identified the bacteria causing the infection and have administered antibiotics, Sandy has been improving quickly. She has energy for extended periods, sometimes even hours at a time. I should probably qualify what “energy” is. She no longer drops off in the middle of sentences… she is fully engaged, able to move between her bed and a chair occasionally, and as mentally alert as someone can be on narcotics. That does not mean that she’s hitting tennis balls against the wall, though I think she is eager to do that sometime soon. It has also occurred to the girls and me that she could probably use Fiddlesticks in the room, though we’re not sure that the nurses on the floor would appreciate it. One nurse might. Maura, the Nurse Practitioner on the transplant team, might appreciate it—she played here at Maryvale and then at Notre Dame (Hannah and Haley have really enjoyed meeting her). Maura might actually encourage the Fiddlesticks.

Last evening, we got up and walked six laps on the floor. SIX LAPS without stopping. This is remarkable for a number of reasons, including the fact that it was at a time (in the early evening) when she has typically had ZERO energy. It is also remarkable because little things like her posture and gait have improved considerably. Riley would be so proud. Finally, I was impressed to see that she actually worked up a little bit of a sweat. Afterwards, she was actually grinning—I think she was proud of the sweat!

Dr. Cameron met with us last night to discuss her progress. They are very pleased with her recovery, especially now that the infection seems to have cleared. Assuming she remains free of infection, they will install a new PICC line over the weekend and see about sending her home late on Monday. She will still not be eating food, but at least she’ll be not eating food in her own home. She’ll be fed via the central line (Anna Nicole gets to come home) for some period, and will still have drains installed. I am sure we'll have home nursing care for a while, too. She’ll be spending a lot of time back at the hospital as an outpatient for a while, but she’ll get to return home each day.

Now that's progress.

One More Thing

If you have ever seen Sandy during her periods of jaundice, and particularly if you saw her in the last several weeks before her transplant, you may have been startled by just how yellow she was. At its peak just before surgery, her bilirbin level was 27.5. For reference, your bilirubin level probably sits in the normal range of .1-1.2. That's one-tenth to 1.2.

Shortly after the transplant, her color had improved dramatically and Sandy's bili fluctuated in the range of 10-12. Way better than it had been, but, technically, still in liver failure. This morning, her bilirubin sits at 2.5 and there is not even a hint of yellow in her eyes!

An Infection

Checking the blog, I see that the last post was on the first of March, a whopping 6 days ago. I am amazed at how difficult it is to find time to sit down and stroke just a few sentences to keep people up to date. I’ll try to bring you up to speed all at once, now:

The hallucinations and subsequent departure from reality are a thing of the past…for Sandy, that is. It seems that she may have set off a chain of events with her example. Her floor-mates are experiencing similar episodes with great abandon. We now appreciate just how minor Sandy’s episode was! Last night, one man attempted to escape repeatedly and kept falling down (I suggested to the nurses that they have a Bears helmet ready for such occasions). There has been yelling and screaming, paranoia, people pulling out IVs and, yes, catheters, and cats mating with dogs! Just kidding about that part.

Throughout last week, Sandy did not seem to improve much. You could tell that things were healing, and the doctors repeatedly confirmed that the organ is working well. Despite this, her energy would not return and even seemed to get significantly worse. Her white blood cell count was elevated, but there was no other indication of an infection. When she did try to drink something, it created immense pain in her stomach. Her blood count dropped to alarming levels, and she was finally given a couple of units of blood on Friday night. That seemed to pick her up a bit through Saturday and Sunday. But then, on Monday, her levels were again dangerously low. She was given two more units of blood while we all wondered what was causing the problem.

When someone keeps losing blood, you immediately wonder where it is going. They have been persistent in imaging her regularly to watch for any bleeding or accumulation of fluids. There has been no indication that anything is bleeding, and her drains are monitored closely and analyzed. No signs of infection.

On Tuesday, the doctors told Sandy that the labs finally identified a bacteria in her system that explained the blood problem. The infection had not been obvious, despite their efforts to monitor her fluids for weeks. Apparently, this is a reasonably well understood bacteria that responds well to antibiotics. Sandy was given the first dose of medication on Tuesday, and the turnaround has been remarkable. She started to feel better within hours. She is back up and walking maybe two or three laps around the floor each day.

I can’t say that the countdown has started, but it is fair to say that there is a floating window now and Sandy may just make it home within about a week or so. She will likely still have certain drains installed and will have to continue to feed via a PICC line. We’ll have considerable work to do with her here just to get her through the day…but it won’t be the hospital! (Thank God, then the cat will stop curling up with me at night. I keep worrying about rolling over on to her)

Through all of this last week, I managed to get sick. I contracted a wicked flu, which I have since learned that I got at the hospital. As anyone can guess, the last thing a transplant patient needs is a sick person in their room. Even someone with the sniffles could prove to be a fatal guest. I started to feel ill on Wed night while watching the Maryland – Duke game (curse ESPN for their “technical difficulties” with 2:17 left in the game!). I knew before the game was over that I would not be stepping foot in that hospital again until I was completely better. The flu lasted a solid (pardon the pun) four days. At the same time, I developed a staph infection in my nose. A sharp otolaryngologist friend of mine picked up on it when I mentioned that my nose was sore. Joe and his wife, Beth, know us well and have been in to see Sandy, so he understands the gravity of my having a skin infection. His nurses swabbed me and he put me on antibiotics. The infection responded right away and the flu is now just a bad memory. Between the two maladies, I had to stay away from Sandy for a week. I felt as crappy as could be from being sick, and then felt like I was not doing one thing to help Sandy. At least I had the sense to stay away, right? I think it is the Husband’s Oath that begins, “First, do no harm.”

Anyway, enough about me… Sandy’s energy is returning. Where she could only hold a conversation for 15 minutes or so last week, she can now talk for an hour or sometimes two (if the timing is right and she hasn’t just received one of her highly potent pain meds!). She still is not allowed to eat or drink anything, but this is not longer the issue that she thought it was. With this kind of progress, it is easy to imagine her coming home.

Still On Anna Nicole

Sandy has now been in the hospital for just over two weeks, and this week has been relatively uneventful, with one notable exception. I will explain that later. Sandy has done a lot of sitting around and healing, though the progress seems lethargic to her. Her energy is still pretty minimal, but the big things are working and the small things that need managing are manageable.

The leak in the pancreas seems to be resolving itself, too. The enzyme levels are down significantly, indicating that it is healing properly. Sandy is still on “Anna Nicole” for nutrition, but now it contains a new formula. This is fed through a central line (PICC line) that was installed through a vein in her right, upper arm on the inside of the bicep. This line travels all the way to the heart. With a little luck, she may be ready to try real food again in the next day or so.

You cannot imagine how uncomfortable it is to not be able to eat or drink anything. Not even ice chips. “My mouth feels like a cardboard box full of glue,” she says.

I suppose I should explain the exception I mentioned above. Sandy might not appreciate my sharing this on the blog, but it is pretty funny.

Some of the narcotics they were giving her were causing hallucinations. These hallucinations were varied and brief and would come and pass at any time. They didn’t seem like much of a big deal and the nurses and doctors thought it was not uncommon, given the magnitude of the surgery, time without sleep and food, and the volume of narcotics she is on. Sometime late on Sunday night, Sandy had a little break with reality. The hallucinations turned insidious and she decided that she needed to escape killer nurses. She managed to pack her bag, put on her shoes, and drag her IV pole with her down to the elevator. After putting up a pretty good argument, the staff was able to return her to her room…and post a babysitter by her bed and guard by the door. I received a phone call at 6:30am on Monday from the Dr on call who started with, “Let me start by first telling you that Sandy is fine.” He told me only that she had become agitated during the night and might call me. “I need to you talk to her in a soothing voice and assure her that everything is okay.” Dr. Singer said. I did not find out about the escape attempt until a nurse told me about it later that morning.

Most of that morning (this was Monday), Sandy was clear but incoherent. She tried to hand me things that did not exist, tell me all about some ribbons that she hung—and she seemed absolutely amazed by the ribbons—and so on. This lasted for several hours until she finally fell asleep, exhausted. She slept for the first time in days.

The hospitals have a term for this, called IC Psychosis. It is a general term to describe when patients just get a little whacky, and can happen when a person is sleep deprived, does not eat, and is under heavy narcotics.

Stay tuned. I’ll update this again as soon as she gets to eat something!