Re-Starting some old meds

The doctors came by, and let me know some of the difficulties may have come about from stopping dosages of steroids and an antibiotic. So now that they have seen how well that worked out, they will start administering same this morning. She currently has a fever of 102, and has been sleeping SOUNDLY since 430AM!

I spoke to the pulmonary doctor individually, and she said they see this a lot, and she said it takes time to recover. I think everyone on the medical team had hoped Denise was ready to move forward, as did we, but she still has some more recovery to her lung function to go. Will update as the news happens.

Day 39 - Back on BiPAP

• WBC is 1130 (4500-11000)
• Neutrophil count is 814. (1500-7800)
• Hematocrit is 27.0 (36-46)
• Platelets count is 20 (150-350)
• Temperature is 35.3 / 95.5
• Heart rate is 112
• BP 137/63
• Transfusion scorecard: platelets (24); blood (20).

Received another bag of platelets overnight; in addition, she may have over exerted herself yesterday, as her breathing became more labored, and is once again on the BiPAP machine. This "assists" with her own breathing ability, but does not actually perform the breathing for her like the ventilator does.

As you can see, heart and BP rates are up, and had a bit of a fever overnight as well. As soon as the doctors make their rounds this morning, I will try to get an another update out.

Happy Birthday Piper!

Piper June Bickford turns 2 today! Adam and Tayler, you are the best parents a child could have and we are so proud of you!

http://www.youtube.com/watch?feature=player_embedded&v=BV2hwPJkLg0

Sat in the chair for 35 minutes

Another tiny step, but it sure felt good to Denise to get off her back for a while. She was tired at the end, but I believe little exercises like this will be in store for the next couple of days, and maybe graduate to a walker by Monday.

Factoid: Johns Hopkins has its very own Zip code - 21231

It didn't hurt like a bitch, but...

it only hurt a little bit. She was quite happy with the Lidocaine use to numb her nasal passages before they took their samples!

We are still anxiously waiting for the rehab people to arrive. In the meantime, she had about a half bowl of potato soup and some vanilla ice cream--Haagen-Dazs, no less.

Factoid: Regarding the Disney characters Goofy and Pluto, did you know Goofy can talk but Pluto can't? That's because according to Disney, "Goofy was created as a human character, as opposed to Pluto, who was a pet".

Let's exercise!

• WBC is 1200 (4500-11000)
• Neutrophil count is 940. (1500-7800)
• Hematocrit is 26.4 (36-46)
• Platelets count is 17 (150-350)
• Temperature is 36.2 / 97.1
• Heart rate is 82

Looks like we will start some rehab this morning, probably after the doctors make their rounds; guessing around 1030 or so. She is looking forward to it!

She was also able to get a little more sleep last night; She fell asleep around 7PM. When the respiratory therapist came in around 8 and listened to her heart and chest, she didn't even wake up!. So I left shortly thereafter and when I cam back this morning I found out she had slept until 11PM uninterrupted. she was able to go back to sleep for a little more, and was wide awake when I arrived at 515 this morning.

March Madness factoid: Ohio State offers a course called "Sports for the Spectator." Students are taught how to be "an informed and appreciative sports spectator."

Platelets have been infused!

Transfusion scorecard: platelets (23); blood (20).

Now there is good news and bad news in this.

The good news is she will be able to re-start her therapy I mentioned earlier.

Now the bad news. Diagnostics tests that cause bleeding can now be performed!

If you remember back to the day before we checked into the hospital, we had a day of surprises. Look here and refer to Surprise #1. Yep. You guessed it. The doctor wants to do another "hurt like a bitch test"! Denise begged the doctor not to do it, and so the doctor took off to discuss with the nurse what options they had. As a compromise, they have sent downstairs for some Lidocaine that they will use to numb her nasal passages/sinus. We shall see how this plays out and I will keep you posted.

Eating a little; tonight's dinner was potato soup and some chocolate pudding.

Finally, for some reason, she just asked the nurse if it would be OK for her to drink some carbonated soda. After having a Cheerwine for breakfast this morning and multiple ginger ales since she was taken off the ventilator last Friday!

Nurse said "No problem". I wonder what Denise would have said if the nurse had said "No way"!

March Madness factoid: Wisconsin is the Badger State because the area's lead miners used to spend winters in tunnels burrowed into hills. Like badgers.

Platelets are here!

Was just informed a bag of platelets is here at the hospital and ready for consumption. This is good news in that she should hopefully be able to start therapy tomorrow and recovering her mobility. Other than that, the only thing left is a

Factoid: Kiribati is the only country that falls in all four hemispheres.

Cheerwine always makes you feel better!

• WBC is 1850 (4500-11000)
• Neutrophil count is 1560. (1500-7800)
• Hematocrit is 31 (36-46)
• Platelets count is 4 (150-350)
• Temperature is 36.4 / 97.5
• Heart rate is 86
• BP is 140/56

Yesterday she managed to eat some chocolate pudding. That was all. However, this morning she has already eaten half of a banana PLUS a can of the magic soda pop from North Carolina called Cheerwine. If I had to describe it, I would say it is close to a cherry Dr Pepper, with less cherry. It is highly carbonated and very tasty. I knew our girl was feeling a little better this morning when she asked for one. I just happened to have grabbed the last 3 I had at home and brought them back to the hospital with me, so we will have to ration the remaining 2 cans.

Doubtful the therapy people will be here again today, as the platelets have not arrived. However, if you look at the numbers above and compare them to yesterday, you can see her WBC, neutrophils AND platelets all went up. Looks like the marrow is working. Anyway, the nurses (including me!) are going to help her sit up on the side of the bed for a while and let her brush her teeth. Other than that, will try to encourage eating better and getting some calories and nutrients into her so she will have some strength when therapy eventually begins

Not much new to report

The platelets never came, because they are having a problem finding the perfect match. As a result, all Occupational Therapy and Physical Therapy have been put on hold. This is because they don't want to take a chance of fall or injury since her risk of bleeding is exceedingly high. In the meantime, they are giving her a drug called Amicar which is often used to treat excessive postoperative bleeding.

They have also reduced the amount of oxygen she is getting to 70%, as opposed to the 100% pure oxygen she was getting yesterday. They would like to get her down to less than 50% in the next few days.

The Morning Report

• WBC is 1570 (4500-11000)
• Neutrophil count is 1270. (1500-7800)
• Hematocrit is 26.3 (36-46)
• Platelets count is 3 (150-350)
• Temperature is 36.4 / 97.5
• Heart rate is 80
• BP is 124/55

She received 2 bags of blood overnight: platelets (22); blood (20). More platelets are on the way!

I guess the really good news I see is there has been no fever for over 24 hours, the WBC and Neutrophil counts are climbing, and heart rate is great. From a vitals standpoint, she has had a really good 24 hours.

Physical Therapy and Occupational Therapy will be here today to work on getting some mobility back. Except for 2 brief stints in the chair, she had been bedridden since March 10. More tiny steps, I am sure.

Doing OK so far with the cannula

Oxygen level pretty steady so far, and she is SO glad not to have a mask on any more.

Forgot to mention earlier she managed to sit in the chair for about an hour this morning. Did well with that, but tired after about an hour. It is quite a struggle for her to get in and out of bed at the moment, but now that she is allowed to eat something hopefully her strength will grow each day.

After the doctors left, Occupational Therapy came by and put her through some tests to see how well her system could handle some simple tasks, like brushing teeth, sitting up, standing up, etc. She needs some work in this area as she really doesn't have a lot of strength anyway, and what little she had earlier was previously used up getting up and sitting in the chair.

Word of the day: Cannula

The doctors have just left.

There are 4 things they are changing now. First, they are reducing the medicine intake via IV and converting some of it to pill form, thereby reducing the amount of fluid intake. Second, they are changing some of the medications she will receive. Third, they are going to begin to let her start eating something. That is probably the best news to Denise, as their concerns for intubating again have apparently been reduced. Lastly, they will be removing the breathing mask Denise has been using when not on the BiPAP machine. All of the masks are very uncomfortable, and they are going going to try using a high flow cannula. Cannula is a funny word some of you may not be familiar with, but you have all seen one!

Factoid : The word cannula comes from Latin ("little reed"). The lady wearing one above is not anyone I know!

The first day of Spring!

• WBC is 730 (4500-1100)
• Neutrophil count is 500. (1500-7800)
• Hematocrit is 22.2 (36-46)
• Platelets count is 9 (150-350)
• Temperature is 36.4 / 97.5
• Heart rate is 88
• BP is 101/56

So it is safe to say a transfusion of platelets and blood is on tap, probably today, depending upon when they can find the proper matches. And how about that heart rate!

Yesterday's trip to CT scan was uneventful. It showed she had fluid around her lungs, and so they have started her on some steroids. Not sure if they found any infection from it, but hopefully the doctors will have an update later.

Overnight she was on assisted breathing machine called BiPAP, which helps with inhale/exhale functions. It requires a tight fitting, very uncomfortable mask across the face, makes speaking impossible and makes her look a little like Hannibal Lecter! At the moment, she is breathing on her own with an oxygen mask, but nothing lasts forever, and she will probably have to go back on the BiPAP as she becomes more tired.

Today's Schedule

Loyal readers of this blog may remember Mr Toad's Wild Ride here. Today we will be going for another CT scan, but this time it will not be a trek across the entire hospital, and will only have to go down to the 2nd floor of this building.

In addition, the Queen of Everything has a date with the Physical Therapy/Rehab team to try to get her back on her feet again safely. She so enjoyed her walks across the hospital in her Under Armour outfits, and looks forward to when she can get out the standard hospital "ass hangs out in the back" issue.

March Madness factoid: Florida State has its own circus! The school offers a one credit "Intro to Circus" course that covers the basics of juggling, among other skills.

Day 34 at Johns Hopkins

• WBC is 990 (4500-1100)
• Neutrophil count is 713. (1500-7800)
• Hematocrit is 26.2 (36-46)
• Platelets count is 19 (150-350)
• Temperature is 38.7 / 101.6
• Heart rate is 128
• BP is 126/54

Also received another bag of platelets (22); blood (18).

Denise needed some assistance with breathing last night. Apparently while she was sleeping her oxygen mask slid off, and her O2 saturation level went into the high 80s...That caused her body stress so they put her on a machine that helped pump the air in and out of her lungs. I am presuming the temporary lack of oxygen is what has caused her heart rate to climb up a bit.

Have not seen the doctors yet, but I imagine they will continue to look for the cause of any fever. The infectious disease staff were here yesterday and so far nothing has been found. The other alternative is the fact all these newly created white blood cells are running around trying to figure out what to do. This engraftment effect can cause a temperature, but until they completely rule out all bacterial/viral/fungal infections, they will still do more tests.

Wants Ice Cream and Ginger Ale

And she can't have any! They still will not let her eat anything in case they end up having to put her back on the ventilator. She is doing well at the moment, but the tale of the tape will be tonight and how well she breathes while sleeping. She is breathing on her own, albeit assisted by oxygen, and is awake and feels much better. I think getting the heart to slow down was a big help.

730PM is shift changeover, and the night nurse tonight is John. He is a great guy, and although Denise has met him she has no recollection of it since he took care of her for 3 of the nights she was heavily sedated on the ventilator. John and his wife go to Aruba every year and they live on a boat on the Chesapeake Bay, so once Denise is able to communicate a little better she will have plenty to talk about.

Lastly, some good news I forgot to share earlier. WBC count is 1350, neutrophil count is 840. Let's hope for a good bump on the overnight results tomorrow morning.

Heart rate stabilized about 20 minutes ago

Have seen some improvement in the breathing. She is feeling better, but we still have to be concerned about the breathing while she sleeps. Special shout out to her Nurse Don, and his wife Beth, who is Denise's respiratory therapist.

It's been a long day, and it isn't over yet.

A rough night

I got a call from the hospital around 5AM this morning. Around 430 Denise had breathing problems again, to the point she was frantic, and her heart rate shot up again. Long story short is she wasn't getting rid of fluids as fast as she should have, and they had to put her on a breathing machine, but did not have to intubate again. Situation is somewhat stabilized and heart rate is down in the 145 area. Doctors and nurses said no visitors today, as they want her quiet, sleeping and resting. I do not have any of the blood counts yet, but will post later if and when I do. It is so important for her to rest and concentrate on breathing so they do not have to shove that awful breathing tube down her throat again!

Another bag of platelets transfused overnight: platelets (21); blood (18)