A Day of Experimentation

If the next 12 hours goes well, Jo will be coming home by noon or so tomorrow. Today was another very good day, although not without some minor hiccups. Jo had a fever for part of the day and she had some redness around her incision. The hospital staff will just need to keep an eye on her over night.

Today was mostly about experimenting with different pain medications. Jo would like to come home with some pain medication that would allow her a little more sleep at night, even if she had to deal with a little more pain during the day. Dilaudid was the pain medication of choice last November and it did it's job, but it also came with some not so desirable side-effects - slurred speech, constant nodding off and a fair bit of nausea.

Jo did quite a bit of walking today. She made at least 2 or maybe even 2 1/2 laps around the hospital floor today. The therapists absolutely love working with her. Their normal patients are between 70 and 80, so of course, the progress is normally much slower.

A Speedy Recovery

So far Jo's progress appears to be moving along much quicker than the first hip. About 24 hours after coming out of the recovery room, Jo walked an entire lap around the hospital floor with her walker. Although the pain medication does make her sleepy, she seems much more coherent than last time.

The only thing we can come up with is that in November, she literally didn't have a leg to stand on. This time around, she has one really good hip and a significant amount of her "referred pain" went away after the first hip replacement. Then too, wouldn't a person just want to recover faster with summer coming up as compared to the first time around as we were heading into winter?

I do have to admit that I may have been a little too detailed in my documentation of the first hip surgery. I feel like there isn't anything new or funny to report...on the Jo front anyway. Now Anna is a different story. She has figured out how to get her pajamas unbuttoned and then off comes her diaper. I can deal with her wanting to take her pajamas off, but little babies need to keep their diapers on when they sleep. Tomorrow, we bring out the duct tape!

A New Right Hip

Jo went into the Operating Room at about 9am this morning and she was finished by 11:30am. She is now in her room resting. According to Dr. Kelly, everything was pretty routine. Jo did get "intrathecal morphine" today. That has something to do with the morphine going directly into her spinal cord, which from the look on Jo's face, seems to be quite effective.

Spring is in the Air...

and by noon or so, Jo will start to get some spring back in her right hip. We are headed down to Presbyterian St. Luke's for hip surgery #2. Jo has received a ton of well wishes over the past couple of days and she wants to make sure you all know how much your thoughts and prayers are appreciated. Thank you!

Happy St. Patrick's Day

3 more days and a wake-up until hip surgery #2. We have pre-game at 6am and kickoff at 8:30am. If all goes as planned, Jo will be back home from the hospital by Saturday. Meema will fly in on Monday to help hold down the fort for that first tough week. Oh, by the way...I do plan on taking a swimsuit or two to the hospital for Jo...just in case.

2 Years, 3 Months and 18 Days Later...

Main Entry: nor·mal
Pronunciation:\ˈnOr-məl\
Function: adjective
Etymology: Latin normalis, from norma
Date: circa 1696

2 a: according with, constituting, or not deviating from a norm, rule, or principle
b: conforming to a type, standard, or regular pattern

synonyms see regular
— nor·mal·i·ty \nOr-ˈma-lə-tē\ noun
— nor·mal·ly \ˈnOr-mə-lē\ adverb

For the first time in over 2 years, Jo's platelet counts today were in the "normal" range. If you look at her CBC report above, you will notice the absence of the "L" next to the Plt count that we have become so accustomed to seeing. This is probably the biggest news we have had in the entire 2+ years!

You can also see the three "L"s next to the RBC (Red Blood Cell), Hgb (Hemoglobin) and Hct (Hematocrit). These are all measurements associated with Jo's red blood cells and all three are still in the low category due to the PNH. However, keep in mind that her Platelets have always been the primary source of source of concern due to the critical level to which they dropped. At Jo's 8 week pregnancy checkup in November, 2004 her body was not producing enough platelets to support everyday life.

We've been waiting a good while now to see that little "L" disappear. There have been a couple of times that Jo's counts got close and then they backed off, dashing our hopes. Today we bask in the sweet thrill of victory!

One Year Checkup at the NIH

Jo had another lovely bone marrow biopsy done today at the NIH and I was scolded for harassing the patient. It's just hard not to play with the patient when she is sedated and can't remember anything she says from one minute to the next. Keep in mind that Jo doesn't remember one single thing from the procedure, but my life will go on with even more memories of that giant needle going into her hip. Oh, the emotional trauma I have endured...

We saw Dr. Schienburg and Dr. Childs today. Even though we haven't spent a lot of time with Dr. Scheinburg, he is the primary physician in charge of this particular protocol, under the watchful eye of Dr. Young, of course. Each of the doctors talked about Jo's Aplastic Anemia as if it were "gone" and the primary source of concern now is the PNH problem. Jo will always have to be monitored in case her bone marrow relapses, but for now the Aplastic Anemia has been pushed into remission.

Jo began having another PNH episode yesterday or today, which is maybe good since the NIH doctors will get some blood samples first hand. Our #1 question for today was in regard to the miracle drug that was supposed to come out last fall to solve the PNH problem. It is still on the way. Dr. Childs expects it to be available in early 2008. Dr. Scheinberg said it could be 3 months or it could be 15 months. I think the real answer is that they are not allowed to give us their real thoughts due to the sensitivity of that kind of knowledge.

We did find out more about the miracle drug though. Jo would have to get it administered intravenously every two weeks...for the rest of her life. Those were not the best words in the world to hear. After some thought, it doesn't seem as bad as at first. More than likely, they will continue to improve the drug and develop it into oral form as some point. As for today, they are probably just hoping to get it to market the fastest way possible.

Another thing the miracle drug will do is allow Jo to stop taking Coumadin every day to thin her blood. The primary issue caused by the PNH clones is the potential for blood clots due to the cell debris in Jo's blood. The miracle drug will stop the destruction of the red blood cells - the reason that clotting is a concern.

By the way, yes I do know that I spelled Dr. Shein "Ice" berg's name 3 different ways above. I have no idea how he spells it.

The Love Bug Visits Highlands Ranch

As has become customary at the Szymanski household, Anna has had her holiday photo shoot for tomorrow's Valentine's festivities. Keep an eye out around Denver tomorrow for the Love Bug spreading holiday cheer and maybe a chocolate kiss or two.

The mystery of the fluids of last week has now been revealed. Jo had an "episode" in terms of her red blood cells. For no apparent reason, her body was destroying red blood cells at a very rapid pace, creating a massive amount of cell debris to be processed by her kidneys. Dr. Alvarez had Jo come to his office for extra fluids 3 days to "flush" out her kidneys and she got a red cell transfusion to boost her counts.

What triggered all of the excitement was Jo's blood test on Monday. It was the first time in 2 years that her blood count report ever indicated an "alert". The report shows an "L" or an "H" and sometimes even an "LL" indicating low and high levels. The alert was for a measurement of her kidney functions. All is back to normal now. In less than two weeks, we head out to the NIH for Jo's one year follow-up and hopefully we'll get more information about the miracle drug that is supposed to solve her red blood cell problem.

Jo saw Dr. Kelly today and she confirmed the March 21st date for hip replacement #2. Dr. Kelly is extremely pleased with Jo's progress and she feels like everything is right on track. Jo did also have the opportunity to talk to Dr. Kelly a little bit about what will happen after this hip is done.

Jo's shoulders and knees still have pockets of necrosis that need to be treated. Jo has not had any increase in the pain in her shoulders and knees, which indicates that the joints are not collapsing like the hips. Dr. Kelly's plan is to use the "core decompression" technique on her shoulders next to try to reverse the progress of the disease. Little Miss Overachiever asked Dr. Kelly if both shoulders could maybe be done at the same time. Dr. Kelly replied, "Not if you want to be able to brush your teeth."

"Gearing" Up for Hip #2

All right already! A guy doesn't do a blog entry for 6 weeks and everybody is ready to send him to the gallows. I thought the old saying was, "No news is good news." Plus, I've been shoveling snow nonstop for 6 weeks. Now that the normal Denver winter is back (60+ degrees today), I guess I don't have an excuse anymore.

Emily is now back from England and she and Anna have gotten reacquainted quite quickly. Emily was very excited to get back to the land of Milk and Honey. She said the snow in Denver even made the news in England! Fortunately for us, Emily's memories of the M*A*S*H unit of last November have all but faded completely away.

My mom is already scheduling her flight into Denver to help for that first week or so after Jo's surgery, which is still set for March 21st. My father will pick her up on his drive back from Arizona to Minnesota for the summer.

Jo and I head out to the NIH in Bethesda on February 26th and Jo will have another bone marrow biopsy on the 27th. We will now only be required to go to the NIH once per year. Hopefully we will get some good news about the "miracle drug" that is supposed to take care of Jo's red blood cell problem.

Jo's red blood cells have actually been low for the last week or so and Dr. Alvarez is considering a red cell transfusion later this week. He called her into his office today for fluids and she has to go back tomorrow and get more. We are not 100% sure what the fluids are for, but they may very well just be to make Jo feel a bit better. Low red cell counts also mean fatigue and Jo has definitely been feeling run down.

As for that new left hip, it feels great according to Jo. The range of motion she has in her left hip right now compared to her right hip is amazing! She says it really does feel as good as new and she cannot wait to get the 2nd one finished.

A Serious "Pat Down" at DIA

Jo, Anna and I traveled from Denver to Texas today, narrowly escaping the remnants of the blizzard earlier this week that wreaked havoc on Holiday travelers trying to get out of Dodge for the Holiday. With many of those travelers trying to get rescheduled on flights this weekend, the lines for check-in and security were at all-time highs sometimes wrapping from one end of the terminal to the other and then around a corner and out of sight.

For many of the weary, this morning was an exercise in extreme patience. For the Szymanskis, it was an opportunity to see the glass half full instead of half empty. This was, of course, our first time to travel since Jo's hip surgery. The baggage guys must have noticed Jo trying to navigate the crowd on one good hip and one bad hip and me carrying the baby and all the luggage...or maybe Jo was secretly waving a much larger wad of money than I had in my hand. Either way, their gracious offer to take us straight to the front of the line was much appreciated!

Of course, with one bad hip, it would still be next to impossible for Jo to walk all the way from the main concourse to our departure gate. The only real option is a wheelchair...which does also mean that we cut straight to the front of the security line via the "airport employee/wheelchair only" security entrance.

Anna and I quickly jumped through security and began gathering our bags when the metal detectors started going off louder than I have ever heard. For a second, I thought that maybe Snoop Dogg or P Diddy had just tried to come through security after refusing to remove any jewelry. I turned around to see my lovely wife, lighting up the security machine like a Christmas Tree and a screening agent saying, "So, Mrs. Szymanski, what exactly are you hiding under your clothing?"

Oh well...all's well that ends well, right? To all of our other friends from Denver that I know had to battle those long lines this weekend at DIA, we (almost) felt your pain, but having a metal hip has to come with a few perks.

Merry Christmas everyone! We love you all!

A Tentative Date for Hip #2

Jo has decided to set a tentative date to have her second hip replaced - March 21st - the first day of SPRING! When we saw Dr. Kelly for Jo's follow-up appointment, Jo was given a perfect score on her report card. She does still need to gain weight, but having a point on the horizon to focus on is good motivation (to eat more ice cream).

Jo has her final appointment with the physical therapist tomorrow who says Jo is the strongest patient they have ever had. Dr. Alvarez thinks it will be 6 months before Jo has her next hip done. Good old Dr. Alvarez, always taking the most conservative approach when Jo's health is on the line.

Anna went to the mall to have her picture taken with Santa and she screamed her head off. Can you blame her? Without the ability to really understand Christmas, the big, fat man in the tight red suit is actually quite scary.

Since I am back into one-blog-per-month mode, I want to pass along our wishes for a Happy Holidays for you all! Have fun, eat a lot, be merry and watch out for fat men in red suits (Anna added that last part).

This is Going to Hurt Me More Than it Hurts You...

Here we are on the 3 week anniversary of Jo's surgery and, magically, she is almost as good as new. She is cruising all over the house with just her cane, she says she feels great and it's as if the last 3 weeks were just a dream.

I asked Jo, "Do you remember waking up in the middle of the night and begging me for more pain medication?"

"Nope."

"Do you remember going to Swedish Hospital in the ambulance."

"Not really."

"How about getting me up every 2 hours to help you out of bed and then back into bed."

"Hmmmmm........no."

These days, Jo sleeps peacefully. It is I who wakes up with the cold sweats, worried that if I close my eyes again I'll be back in the jungles of Vietnam, the bombs going off all around me. The Viet Cong are closing in on my location, while I lay beneath the waters of the river bed, breathing through a straw, hoping not to get caught...okay, maybe I was still in diapers when Vietnam ended, but I could have nightmares about Desert Storm, although I never did leave the comfort of my engineering office during the entire campaign.

Anyway, it's funny to look back over the last 3 weeks and realize that Jo remembers very little of it. Just today, she asked Emily who got her the get well balloon and bear. Emily had to remind her that she had gotten it for Jo herself.

Most of my concern centered around how much pain Jo had, but 3 weeks later she has almost no recollection of that pain. It makes you wonder...if Jo can't remember it, did it actually happen? In Jo's mind, or you might even say that in her perception of reality, it actually didn't happen.

Bring on the right hip!!!

No More Walker

Shortly after being released from Swedish last week, Jo came down with a terrible cold that really hit her hard. Her blood counts are still recovering from her surgery and the cold definitely took its toll. Yesterday and today she had to go to Dr. Alvarez' office and get IV fluids, but this evening things are starting to look up.

Jo is now walking around the house with just her cane, and she has been completely free from pain medication for about 3 days. Actually, the cold she had created headaches bad enough that it made her completely forget about any lingering hip pain.

Overall, it looks like the true recovery process is about to begin. Jo needs to gain about 10 lbs. and work on getting her full strength back in preparation of doing it all again after the 1st of the year. On Thursday, Jo and I are going to see Dr. Kelly for a follow-up and I am sure we will talk about a time frame for the 2nd hip.

Even in her weakened state, I have noticed how much easier Jo gets up and down from a sitting position and how much easier she gets in and out of bed. Already, I can see the new hip making a tremendous difference!

Happy Thanksgiving!

Has anybody seen a couple of Pilgrims? I have a dinner date and I don't want to be late.

Clean Bill of Health

Everybody seems to be back to 100% and Meema escaped completely. Supposedly, you are contagious before you even know that you are sick, so I feel sorry for all those kids at Kindermusik last week!

The Occupational Therapist visited Jo today and admitted there wasn't much more she could do to help. She asked Jo if she could take some video so she could create a short film to motivate her 70 year old patients to get back on their feet a little quicker.

And Then There Was One

Jo slept extremely well last night. How do I know? Because I was up being sick all night. Being the student of positive thinking that I am, I have told myself a million times, "I don't get sick." However, last night this little family bug slipped through the cracks. Anna is on the mend, Emily is on the mend and my mother is the last little Indian still standing. Although the doctors never found anything that they could blame Jo's high fever on, I feel that it is very possible that she got this bug that started with Anna and now spread to us all. Jo had a very different experience than the rest of us, but Jo also had very different care.

One thing that I think is important to note here is how well Jo's immune system was able to cope with a very tough situation. She did get a ride to the hospital and she did get medication to boost her white cell production in the hospital, but back before we went to the NIH, this is just the sort of situation that her body may not have been able to handle at all. Of course, it is not the kind of "test" that we want to volunteer for again, but there is some peace to be found in knowing that Jo's body (with some help) can fight off a very serious attack.

As for the new hip, Jo is still using her walker a lot, but she can definitely get around with just her cane and even no help if necessary. The biggest struggle is the fatigue that sets in when you combine some physical exercise with strong pain medication, but progress can be seen every day.

Scratch the Email Idea

Things seem to be changing around here faster than my father's predictions for the Minnesota Vikings' season. After 36 hours in the hospital, not one single thing had turned up to indicate why Jo's temperature may have spiked, and Jo actually looked ready to head on back out to the dance floor. My mom and I walked into her room this morning and she was walking around without even using her walker.

This afternoon, we returned home again - so, scratch that email idea I had yesterday. Once we got home, things got a little tough again. They aren't so bad that we expect to go back to the hospital, but the picture isn't as rosy as it was at Swedish. Some of that is due to the difference between Jo getting pain medication delivered directly to her blood stream vs absorbing the medication through her stomach. Even though it is a bit more of a struggle, Jo would much rather be at home.

Send an Email to Jo in the Hospital

Jo's temperature has come back down to normal today. So far, the cause of the high fever has not been determined. She is expected to be at the hospital for another 3 or 4 days. While she is there, please feel free to email her by clicking on the link below. Volunteers at the hospital will deliver emails to her daily.

If you do email her and you don't live in the Denver area, please include your city, state and/or country. I know that dancers all over the world read this blog and it will be fun for Jo and the volunteers to see where the emails are coming from. Jo is registered at the hospital under the name of Jo Thompson Szymanski and her room number is 7-121.

(Link removed becuase Tim may have jumped the gun.)

Jo's Temperature Hits 103.9°

Today started out really good. It looked like we were over the hump. Anna scarfed down some eggs for breakfast and Jo's temperature had come down to almost normal. A little after noon, things started to go downhill fast.

Jo's temperature started to rise and it quickly got to over 101.5°, which is the point at which we had been instructed to call the doctor. After a quick call to Dr. Alvarez, the decision was made to make a trip into his office. By the time Jo got to Dr. Alvarez' office, her temperature was 103.9° and she was in terrible shape. Dr. Alvarez arranged for an ambulance to take Jo over to Swedish and have her admitted via the Emergency Room.

After 5 hours in the Emergency Room, Jo is now resting easy in a room at Swedish. Her temperature has come down to 101° and the pain medication that they have given her is working well. Dr. Alvarez said he may keep her there 3 to 5 days to make sure she is properly cared for.

The number one concern is that of Jo getting an infection that her body would not be able to handle considering the history of her immune system. The obvious worry is that her incision could become infected, but actually her incision looks extremely good and everybody that looked at it said they would be very surprised if it was causing the problem.

I am sure that by the time Jo leaves the hospital, Dr. Alvarez will have run every test known to medical science and hopefully we will know exactly what has caused this scare.

Never Trust the Patient

Last night, the patient tricked the caregivers into a double dose of pain medication. Of course, Jo did not do it intentionally, but we learned a valuable lesson - never trust the patient. Jo had gotten into bed for the night and I had given her some pain pills. After dosing for a few minutes, Jo woke up and asked Emily if it was time for some medication. I have a new understanding of why hospitals have a system for everything.

Today will be a day filled with visitors. The home care nurse is already here to draw blood and check Jo over. Later today the physical therapist and the occupational therapist will come by. Then tonight, the reserve forces get called into action. Meema is flying in from Minnesota to help out for a week. We really need Emily for another year, and preserving her sanity will help us make that possible. Thanks Meem!