A picture is worth a thousand words

After 4 weeks of being in bed, Denise was untethered from her IV and all the monitoring equipment from intensive care. She figured she ought to thank somebody, so we went to the appropriate place.

Once again, Happy Easter.

Happy Easter everyone

Thank you Barbara, for the Bunny and the treats!

Forgot to mention....

I wanted to share with you a couple of things that are truly indicative of the care and support the staff provide that is above the call of duty.

There is a young man here named Kevin who has cleaned Denise's suite (room!) just about every single day we have been here (52 and counting). Never mind the fact he ALWAYS asks Denise "Is there anything I can get you?" when he is finished cleaning. Never mind the fact he ALWAYS asks ME "Is there anything I can get you?" when he is finished cleaning. What stood out happened yesterday, when he came in and said he was headed out West for a family vacation and was going to be away for 10 days. He said, "I am not sure you will be here when I return, at least I hope not, but I wanted to say goodbye in case I don't get to see you again."

One of the senior nurses here is named Don, and he has become pretty close to both of us, especially the past 4 weeks, as it was Don who watched over Denise the first 3 days she was on the ventilator. But this isn't about Don; it is about his wife Beth. You see, until yesterday, Beth was the Respiratory Therapist who dealt with a lot of Denise's breathing issues the past 4 weeks. What makes Beth unique is the fact she personally gave Denise feet and leg massages on 4 separate occasions AFTER she had finished working for the day.

Beth's last day here was yesterday, as she has accepted another position that more readily accommodates the hours she wants to work and will give her a shorter commute. She made a point to stop by the room last night AFTER she was finished working to wish Denise luck and to say goodbye. Again, above and beyond the call of duty if you ask me.

And so I say, if you ever get sick, this is the place to be. All hospitals are pretty much alike from a facilities standpoint. It is the people that work there that differentiate one from another. I have to believe it is a big factor why Johns Hopkins has been the number 1 ranked hospital every year since 1991.

Not much to report

• WBC is 2570 (4500-11000)
• Neutrophil count is 2544.(1500-7800)
• Hematocrit is 31 (36-46)
• Platelets count is 14 (150-350)
• Transfusion scorecard: platelets (37); blood (22).

Factoid: Luciano Pavarotti received 165 curtain calls on February 24, 1988, after singing in Donizetti’s L’elisir d’amore in Berlin.

Opening Day for the Orioles!

• WBC is 2690 (4500-11000)
• Neutrophil count is 2550.(1500-7800)
• Hematocrit is 30.4 (36-46)
• Platelets count is 34 (150-350)
• Transfusion scorecard: platelets (37); blood (22).

Received yet another bag of platelets last night, which is why the platelet count is so high. She was also on the BiPAP machine last night for a couple of hours, but this was only to allow her body some rest and the machine could assist with breathing.

Factoid: Barry Bonds broke Hank Aaron's home run record. Aaron broke Babe Ruth's. And Ruth broke Roger Connor's—he hit 138 HRs between 1880-1897.

Rooftop landing

So we are just sitting here looking at each other when this loud noise comes through the window. Looked out, and was able to capture the above picture of one of the Johns Hopkins Lifeline helicopters landing on the roof of the new Bloomberg Childrens Center.

I don't think there are any patients in the building yet, though there are some administrative staff there already. This may have been a practice session since this is a new heliport as well. You can click on the photo for greater detail. 

Still resting

• WBC is 3220 (4500-11000)
• Neutrophil count is 3070.(1500-7800)
• Hematocrit is 32.1 (36-46)
• Platelets count is 10 (150-350)
• Transfusion scorecard: platelets (36); blood (22).

Nothing new to report this morning, other than the 2 more bags of platelets that came in.

Factoid: The most densely populated state in the United States is New Jersey with over 1,000 people per square mile. The least densely populated state is Alaska with 1 person per square mile.

The new buildings

A couple of photos of the newest additions to the hospital complex.

The picture on the left is the new Charlotte Bloomberg Childrens Center, named after Michael Bloomberg's mother. He is a graduate of Johns Hopkins, and this building will have 205 private inpatient rooms.

The photo on the right shows the Sheik Zayed Cardiovascular Cardiovascular Critical Care Tower, named after Sheik Zayed bin Sultan Al Nahyan, who was the ruler of Abu Dhabi for over 30 years and whose family donated the funding for its construction. It contains 913,000 square feet and will have 355 patient beds.

All the patients in the existing cardiac and children sections of the hospital will be moved in a tightly choreographed sequence April 29-30.

Interesting as the move may be to watch, I sure hope we are not here to see it!

More about the fence

I thought would post a couple of pictures of the wrought iron fence I took yesterday just before l left to give you some perspective of it.

The first picture is of the original hospital and the famous dome which is used everywhere here as a logo.

The second picture is a close up of the top of the fence. The little round bases at the bottom of the tips is where Denise's "paperweight" came from.

Day 50

• WBC is 3060 (4500-11000)
• Neutrophil count is 2860.(1500-7800)
• Hematocrit is 31.1 (36-46)
• Platelets count is 18 (150-350)
• Transfusion scorecard: platelets (34); blood (22).

As busy as Monday was, yesterday was just the opposite. Doctors want Denise to take it easy for a couple of days and see if her lungs will heal a little faster with the increased dosage of steroids she is on.

Calorie intake is climbing and the nutrition staff are happy about that.

Factoid: There are no natural lakes in the state of Ohio. All are man-made.

A piece of history, or a paperweight

For those of you that have not been here, this historic place is surrounded by a magnificent wrought iron fence that is over 100 years old.

As I was returning from lunch in the cafeteria, I walked outside and noticed some workmen working on said wrought iron fence. Specifically, a section that was damaged several years ago when a car hit a lamp post and the lamp post fell onto the fence. (There is a lot of activity outside on the grounds of the hospital, as the new surgical and children's wings are slated to open later this month.

Anyway, the workmen were in the process of cutting off the top tips of the damaged portions of the fence, and when I saw one of them just throw the piece of iron into the back of their truck as if it were litter, I asked them if I could have it as a souvenir for the Queen.

So, the photo at the top is the piece rescued, to be reincarnated as a paperweight for her desk, and also a reminder of this wonderful hospital and the kind and caring staff here.

Update after rounds

They are going to increase steroids again, as the doctors are now convinced excess fluid is not causing the breathing problems this go around. In essence, they feel the lungs are inflamed, and need more time to heal. Since Denise is low on platelets, it is possible there could be some bleeding internally due to the inflammation. So, the steroids will (should) fix this.

If you remember, last Friday they were in the process of weaning her off oxygen because she was doing so well. At the same time, they were decreasing the steroids she was receiving. Since her breathing has gotten a little worse, this is the reason they are increasing the steroids. Should have improvement by tomorrow morning, if not sooner.

Factoid: Istanbul, Turkey is the only city in the world located on two continents.

Just a factoid too good not to post

The Amazon River pushes so much water into the Atlantic Ocean that, more than one hundred miles at sea off the mouth of the river, one can dip fresh water out of the ocean. The volume of water in the Amazon river is greater than the next eight largest rivers in the world combined and three times the flow of all rivers in the United States ....

Yesterday was busy

• WBC is 3480 (4500-11000)
• Neutrophil count is 3180.(1500-7800)
• Hematocrit is 30.9 (36-46)
• Platelets count is 37 (150-350)
• Transfusion scorecard: platelets (34); blood (22).

Started off the day with the doctors making their rounds. Then they brought in the pulmonary docs again to further evaluate her breathing issue. Next up was the Graft Versus Host Disease specialist to see if any occurrence of that has started. Then the Physical Therapy lady was here.Then she was taken to get a CT scan. Finally, the dietitian (is that spelled right?) came in and offered some suggestions on what to eat, even if it does taste bad.

When I arrived this AM at 515, she was already up and sitting in her chair. Not quote sure what the day entails yet,

And the food I bought at Safeway the other day? Hasn't touched it!

Dinner for the Queen, and her subject!

First, the counts:

• WBC is 3970 (4500-11000)
• Neutrophil count is 3692. (1500-7800)
• Hematocrit is 35.4 (36-46)
• Platelets count is 12 (150-350)
• Transfusion scorecard: platelets (32); blood (22).

Now, we have had a few issues with the food here. Either it tastes like crap, or it isn't what she ordered (and still tastes like crap!). This is really the only negative I can point to the whole time we have been here. However, it reached a crescendo the other day when the manager came up after we complained they screwed up her meal 4 times in a row.

So this manager, conscientious as she is, took Denise's order for the next 3 meals personally to ensure nothing would be in error. Didn't work out well at all. All three were exactly what Denise did NOT order.

Now mind you, we are late in the ball game where Denise really needs to eat in order to get some decent nutrition to start rebuilding her muscles, especially her arms and legs. Not only were we irate at this turn of events, but our dear Brazilian nurse Carla, who actually oversaw the transplant way back on Feb 21, got on the phone with some supervisor and then things started to happen.

The next 3 meals were EXACTLY what Denise ordered, and as an added bonus, we both were allowed to order off the VIP menu, usually reserved for visiting Kings and Queens. (I guess they forgot Denise is a Queen). We had Filet mignon and NY strip steaks, caesar salad, carrots, potatoes, baked potato, shrimp cocktail, lentil soup, crab soup, cheese cake, fruit tart and more. All complimentary. Wish we could do that for every meal, but this type of food is pay as you go. If we had ordered it ourselves, it would have been a 100 dollar charge that insurance won't cover. However, we are happy to pay for it when Denise wants a special treat.

Today is the 48th day we have been here!

Factoid: Only 10% of energy in a light bulb is used to create light. Ninety percent of a light bulb’s energy creates heat. Compact fluorescent light bulbs (CFLs), on the other hand, use about 80% less electricity than convention al bulbs and last up to 12 times as long

WBC and Neutrophils almost doubled overnight

• WBC is 3630 (4500-11000)
• Neutrophil count is 3290. (1500-7800)
• Hematocrit is 35.8 (36-46)
• Platelets count is 22 (150-350)
• Transfusion scorecard: platelets (32); blood (22).

This transplant thing really works! Very excited about the counts. Not much else to report other than a few hours sitting in the chair yesterday. I also used public transportation and my feet to go to a Safeway to get the Queen some food and high protein items that she will hopefully eat.