"Put Your Head on My Shoulder"

Name that artist and the year that the song was released as a single. The first person to correctly log their answer as a comment will receive a gift certificate for one free hour of private dance instruction with Jo, redeemable soon.

Jo and I went to visit with Dr. Kelly yesterday and her hips both look tremendous! Her legs are almost exactly the same length, for which Dr. Kelly took full credit. I had to remind the good doctor that after Jo's 2nd surgery, Jo thought her legs were actually different lengths. It was I who suggested she jump up and down on the new hip to cram it down a little further into her leg bone, thus accomplishing a "self-adjustment".

Once the celebration settled down, Dr. Kelly decided to pull us both back to reality. She very politely asked Jo when she wanted to get going on the first shoulder operation. I think we were kind of focused on enjoying the summer and we had forgotten about the shoulders.

Both of Jo's shoulders have fairly large pockets of necrosis, which can clearly be seen on her x-rays. The good news is that both shoulders are still shaped appropriately and there appears to be minimal collapse. The bad news is that her left shoulder is cracked, which explains why her left shoulder has been bothering her. Dr. Kelly believes that this crack brings about a sense of urgency.

Dr. Kelly would like to do what is called a Core Decompression on each of Jo's shoulders, one at a time. This is a procedure where she would drill a hole into Jo's shoulder and then scrape out all of the diseased bone. New cells are then put into the diseased area to promote healthy growth. There is even some stem-cell research being done where stem-cells are harvested and then transplanted into the affected area. Dr. Kelly is researching the options right now.

Jo could be back in the operating room within 2 weeks. Fortunately, the shoulder surgeries will be child's play compared to the hip replacements. Based on Jo's incredibly fast recovery from the hips, she could possibly be an outpatient for the shoulders. She'll keep her arm in a sling for a week and then she'll need to limit her range of motion for another month.

Jo's blood counts are doing great. She had her counts checked today and her platelets were somewhere in the 150s. I'm still anxious to meet with Dr. Alvarez and see what he has to say about the new medication that is available for Jo's PNH problem.

Emotional Highs and Lows

Has anyone else noticed that air travel seems to be getting more and more cumbersome all the time? When was the last time you sat on an airplane with an empty seat beside you? What's up with Denver's airport not having a Starbucks? The last time I checked, we were in the 21st Century after all.

The other day I was flying to Texas to rejoin Jo and Anna and my flight left from DIA out of gate B81. Gate 81??? The highest numbered gate I had ever seen was about 51. How could there possibly be another 30 gates in that direction? Well, at the end of the terminal, there was a secret passageway around the corner that did lead to another 30 gates or so. However, the most exciting part was that right around the corner, there was a Starbucks!!! I knew it was going to be a great day...or so I thought.

As I took the last swig of my 20 oz Venti Latte, the United Airlines gate agent came over the PA system and said, "Houston passengers, please be advised that the lavatories on our aircraft are not working, so please prepare yourself as best as possible for the 2 hour flight." Just when I thought I had experienced everything the airlines could throw my way...

By the way, Jo is doing well. Recovery is slow, but steady. We anxiously await upcoming visits to Dr. Alvarez and Dr. Kelly to get what should be very good status updates.

Daily Progress

Every day, Jo feels a little better. She is now telling me that she is between 80% and 85% of normal. Her headaches slowly went away over the course of about 4 weeks and her hips are really starting to feel good. After a year of hobbling around, she is having to concentrate pretty hard on walking "normal" again and it will still take several months for her to regain her strength, especially in her legs.

Jo has been in Texas for the past couple of weeks and that makes it tough to get any news regarding her blood counts. The TX doctors send all the results back to Dr. Alvarez and unless we make a call to Dr. Alvarez, we are kind of out of the loop. The way I see it, if Dr. Alvarez doesn't call us, everything must be okay.

Jo and Anna will be back in Denver next week. Dr. Alvarez should have information on Jo's ability to take the new PNH drug and Jo's 8-week post-op appointment with Dr. Kelly will be coming up. Currently, we are just enjoying our time away from the doctors and the hospitals.

Bye Bye Emily

Earlier this week, Emily went back to England and we had to say our goodbyes. Emily did leave 10 days earlier than expected and I know some of you have wondered why. In light of Prince William's recent breakup with his girlfriend, Emily felt that she couldn't waste ANY time. The opportunity to potentially marry into the Royal Family is a once in a lifetime opportunity. How could we possibly offer anything but support?

Emily was with us for a total of almost 6 months and she was an absolute gift from Heaven. She got us through both of Jo's hip surgeries and for that we will be forever grateful. Anna is mostly happy that Emily agreed to leave her stuffed "Hippo" behind. We are working on a Green Card for Hippo so that he can stay permanently.

Jo has slowly stopped taking her pain medication and you would think she is doing great. The other day I asked her where she thought she was on a scale of 0% to 100%. I was shocked to hear her say, "I'm over 50%." I was expecting 85% or so. I think that shows how much Jo is just keeping to herself as she works toward a full recovery.

The other day, Jo's platelet count was at 168,000, which again puts her over the 150,000 mark required for the very low end of normal. This was great news since it always takes some time for her blood counts to recover after surgery. As for Jo's blood issues, our primary focus right now is doing some prep work to determine if and when Jo can start taking Solaris, the miracle drug that will help the PNH problem.

Easter Comes a Week Late

With Jo in the hospital last week on Easter Sunday, the Easter Bunny agreed to make a special trip to our house today to celebrate a belated Easter...and we got a lot better weather for our Easter than everybody had last weekend!

Jo is holding steady. The past couple of days she has felt like she might be having some relief from her headaches, but it is tough to tell. The pain medication masks the pain, but she still feels pressure in her head. Sometimes the pressure seems to be going away, but then it comes back. For now, we continue to wait.

Sky Ridge - Two Thumps Up!

Jo came home from the hospital today with a good plan for getting through the next couple of weeks. Overall, she said her experience at Sky Ridge was tremendous, second only to the NIH, which isn't even a fair comparison. At the NIH, each nurse has only 2 patients and every patient on the floor as the same health problems and the same treatment.

Sky Ridge is a great example of progress in the world. Many of the things that none of us like about hospitals have been eliminated. Almost every room is a private room, the rooms are as nice as a hotel and the food is actually very good. When we got home today, Jo got into bed and the first thing she said to me was, "This bed isn't as comfortable as my bed at Sky Ridge."

Now, I am still trying to wrap my brain around the Amenity Suites. These are special rooms on each floor that you can only get if you pay a fee over and above what your insurance covers. Jo and I took a walk one afternoon to sneak a peak and the room was very nice. If you are interested, here is a little info that might push you over the edge when the time comes for your next hospital stay...

A New Drug of Choice

Last night Jo was given a Fentanyl patch for her pain. This is a patch that she wears on her chest for 72 hours which slowly releases Fentanyl into her system through her skin. Fentanyl is another very powerful drug in the same family of drugs as Dilaudid and Percocet, both of which we are very familiar.

Jo isn't feeling much pain and she seems to be doing really well. Her headaches are pretty well masked by the Fentanyl, but they do come and go.

Today, the nurses unhooked Jo from all of her IVs so that we could work toward getting out of the hospital. If Jo can go 24 hours with her pain under control, we will head home - most likely with a handful of Fentenal patches. Then we'll give her body time to hopefully repair the spinal fluid leak on its own. In a couple of weeks, if the headaches are not gone, the "blood patch" procedure will have to be considered.

The End of a Tough Week

I wish I had some good news, but I don't. Jo is having a very tough time dealing with her headaches. Now and then, the pain medication relieves the headache, but then Jo usually feels nauseous.

There is no good solution to this problem in the immediate future. It is possible that the intrathecal morphine shot that Jo received two weeks ago has cause a spinal fluid leak, causing the headaches. The treatment for that is a procedure to attempt to patch the hole. The anesthesiologists are unwilling to attempt that procedure because Jo would have to come off of her blood thinners, which would put her at risk of more blood clots. Since she already has a blood clot, it would be extremely imprudent to put her in a situation where she risks even more blood clots.

The best solution seems to be to tough it out until her body repairs the leak on its own (if there is indeed a leak). How long that will take is unknown, but it could be a couple of weeks. Our primary concern right now is identifying what kind of medication will get Jo through the rough times ahead.

The Headaches Continue

Jo spent another tough day at Sky Ridge today. I did get a chance to talk to Dr. Alvarez and get his thoughts. They have found 2 small blood clots in veins in the back of Jo's neck. According to the neurologist, the blood clots look to be a couple of months old, but Dr. Alvarez thinks they are related to her hip surgery two weeks ago. Jo is always at risk when it comes to blood clots, but especially when she has her surgery since she has to stop taking her blood thinners and then start again after the surgery.

The other possibility is that the headaches are spinal headaches that have been caused by a problem with the Intrathecal Morphine she received two weeks ago. As I understand it, the needle that delivered the Morphine to her spinal cord may have caused a "leak" and her spinal fluid is slowly leaking out. There is a procedure that can be done to attempt to "plug" the hole, but Jo cannot have that procedure until the blood clots are addressed.

Jo has been receiving medicine to break up the blood clots all day. Off and on, she feels some relief and other times the headaches are pretty intense. These blood clots are extremely serious and Jo will most likely stay in the hospital for anywhere from 3 to 4 more days or even a week.

A Bump in the Road

Last Sunday, Jo started to have headaches and by Monday night her head hurt bad enough that we needed to go to the Emergency Room at Sky Ridge Medical Center, Spa & Resort. If you haven't been to the new Sky Ridge facility in Lone Tree, you really should go and take a tour. It is more like a hotel than a hospital.

Monday night, Jo was admitted to the hospital and tonight she will spend her second night there. They have done lots of tests, but so far they have not figured out what is causing the headaches. Anybody that knows Jo, knows that she has a pretty high pain threshold, so her pain has to be pretty bad for her to be in the hospital.

Now, That's Not Natural

At 5:45pm last night, Jo took some pain medication - 5 days and 6 hours after surgery. At noon today, she called me to let me know she slept through the night, she had forgotten to take her pain killers and she was quitting, cold turkey! I told her that nobody would ever give her a hard time if she wanted to at least use the pain medication through the one-week point tomorrow morning. She says she can tough it out. At first, this speedy recovery thing was really cute, but now she's just showing off.

My Sacrificial Spirit...

Jo had another good day of recovery, but I don't want you to think that this hip has been a complete walk in the park. Well, yesterday, we did go for a walk in the park, but you know what I mean.

In one way, this hip has been 10 times worse than the first hip. Because Jo needs her surgical hip toward the outside of the bed, we have had to switch sides of the bed. If you have ever slept on the wrong side of the bed, you know how tough this has actually been on me. It's hard to believe how sore you can get by morning when you sleep on your "other" side.

I guess if that's the worst thing we are dealing with, we should consider ourselves pretty lucky. By the way, I've only asked Jo three times today if she thinks she is up for switching back.

It's All About Priorities

Jo got a lot of rest today, but there was also time for a Sunday morning drive with a stop by Starbucks. You'll have to go back and read the blog entries from the first hip surgery to really understand how dramatically different this one has been. For all of you out there that have been procrastinating having joint replacements, don't read any of that stuff from November. I probably embellished the entire first experience anyway. This 2nd hip is how your experience will probably be. Trust me.

I did get a call from a home health care nurse today that wanted to speak to me and find out how my mom was doing with her hip replacement. Jo and I got a good laugh out of that one. I told the lady that we don't need her to come by. Jo will be going in to see Dr. Alvarez tomorrow and they will take care of checking everything that needs to be checked.

Anna is 4 1/2 months older than she was in November and she is stronger and faster than she was back then. She is having to learn how to be gentle with mommy. She likes to hold on to the side of Jo's walker and pull to try to get mommy to walk faster. She regularly points to Mommy's "boo boo" which is covered with a huge bandaid that covers Jo's entire hip and half of her backside. By the way, at the hospital they call it a "Texas Bandaid". How appropriate.

Has Anybody Seen My Wife?

I think every new parent secretly worries that their newborn baby will accidentally be switched with another baby in the nursery and they will end up with the wrong kid. I'm not sure how it happened, but I think I brought the wrong wife home from the hospital today.

My wife supposedly had a total hip replacement 3 days ago. The woman I brought home is already walking all over the house, sometimes with her walker and sometimes not. She has unpacked and put away all her things, made herself an evening snack and put her little baby to bed. I was expecting slurred speech, a little drooling and incoherent speech for a couple of weeks.

Percocet appears to be a much better match for Jo as far as controlling her pain. I hate to count any chickens before they are hatched, but so far, so good. We'll see how the night goes.

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!