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.