Day +18 Up, Up, and Away

I would like to start today’s blog by thanking the invisible person who slipped sleeping pills into my dinner last night. Thanks to you, I was able to get a pretty good night’s sleep. Jason and I woke up around 9:00 AM and we both feel more rested than we have in days. If I were to venture a guess, I would say that we both were able to get 5-6 hours, which is a record since we have been here.

Last night we spoke to one of Jason’s doctors about his blood and marrow goals for over the weekend. By Monday she was hoping that Jason’s White Blood Cells would increase from 0.4 to 1.0. It’s only Saturday and, drum-roll please, Jason’s White Blood Cell count is 0.9!

The goal for Jason’s hemoglobin was that it would remain stable. Yesterday, Jason’s hemoglobin was 9.1, today it is 9.2.

The goal for Jason’s platelets (platelets are used to clot and heal) was 20,000 by Monday (we would say “20”). It’s the beginning of the weekend and Jason’s platelets are 22!

As far as Jason’s blood is concerned everything is on a slow, steady, positive course. Jason still needs Neutrophils, his first line of defense against infection, of those he has none. But we are hoping that as his white blood cells increase his neutrophils will start to increase. And Jason’s vital signs are steady as well. His temperature was 98.8 degrees Fahrenheit, his oxygen level was 98%, his blood pressure is 90/58 (nobody panic, it’s not that low for a young, healthy, athletic human being who has been through a lot and is on a diuretic).  

A little hiccup this morning was the sudden nausea that led him to vomit. This has only occurred once so far today but we are watching him.

The infectious disease doctors were here this morning and they were happy that Jason was feeling OK. In five days they will perform a blood test to see how much Voriconazol (the antibiotic to help his pneumonia) is in his system, and will check his lungs. Today we are grateful that Jason is feeling good, his numbers are increasing, and that we can see some light at the end of the tunnel.

Continue to pray for his lungs, neutrophils, and protection from infection.

And, “Hello,” to the new readers in the Netherlands! Thank you for reading the blog and I hope it blesses you.

Day +17: Laughter and Lungs

As many of my friends are aware, I sleep walk, sleep talk, and occasionally yell in my sleep. When I have dreams I wake up to write them down in the dark and sometimes I write some pretty bizarre sentences.

Just last night I was speaking with Matt, Jason’s NA, about my sleeping habits. We chuckled about how his wife carries on full conversations and about how I may wander the halls of the hospital.

Then, Jason’s lungs started having more problems. His oxygen level dropped and he was having trouble staying awake so they performed another chest xray and determined his lungs still hold fluid. To strip some of the water off of his lungs they gave him another dose of Lasix, which would make him pee all night long. If Jason is having trouble breathing he cannot stand up and walk to the restroom so I hold the urinal by his bedside. Basically, when Jason has to pee I need to wake up and help him, then I need to write down on the white board how many ounces he urinated. I do this all the time.

Well, apparently I was exhausted because, when I woke up this morning, Matt was looking at the whiteboard with a look of confusion. If you glance at the image below you will see that I was not writing ounces but rather words. I believe he asked me, “What is ‘click’?” We laughed for quite some time and then he told every nurse on the floor about my bizarre nighttime scribbles. I hope it makes you laugh.

What was I thinking???

Jason’s lungs are still holding fluid, and he has an infection (which would explain the on and off fevers over the course of the past few days). Infectious Disease doctors believe he has pneumonia and were hoping to perform a Bronchoscopy to be certain of the very best treatment options but Jason’s platelet count is low enough that there is a risk of bleeding if the procedure is at all abrasive. If any abrasion were to occur, Jason's stomach or throat could start bleeding and would not heal, plus they would not be able to perform any surgical procedure because it would increase the bleeding. They will cut down Jason’s liquids today (reduced platelet infusions, et-cetera), and they will begin an infusion of Vancomycin antibiotics in the hopes that it will help relieve the infection in his lungs. Please pray for his lungs and his overall health.

The good news? Jason’s White blood cell count is 0.4 (woo hoo! Going up… slowly), and his platelet count is now 10 (whoah! Double digits! Yes, still incredibly low). His hemoglobin is 9.1 but this could be higher than the real number because he was holding so many fluids when this number was revealed. Basically, it appears that his marrow is slowly growing and producing. Our hope is that it will continue growing and replace the awful immune system that was killing him previously. Keep praying.

In an upcoming blog we will be discussing the role Jason’s sister will be having in Jason’s recovery.

Also, Hello to everyone in Botswana who is reading the blog and praying! Thank you to Jason and Deb Shirek for asking friends and family to pray for Jason – you two are wonderful. 

Day +13: Take Some Deep Breaths

Jason and I have had a few lousy days in a row and our lack of sleep hasn’t made our days any better.

Around 3:00 this morning Jason started breathing heavily and coughing often. After a customized mixture of cough medicine was administered (a giant oral syringe of red gunk that took 45 minutes to create) his oxygen level reflected that he was only breathing about 75% of the oxygen he needed. What followed were a series of phone calls to his doctors, an oxygen mask and coaching him to “take some deep breaths”, a heart monitor, oxygen monitor, 15-minute vital checks, and a chest x-ray. Two different doctors, four or five nurses, and a grouchy respiratory therapist packed the room from 4:00 AM until about 11:00 AM. That’s right, another busy day.

The preliminary results of Jason’s chest x-ray show a lot of foggy areas indicative of some fluid in the lungs and/or inflammation. Doctors were unable to see small dense areas that would suggest a bleeding spot so they are currently not concerned about a bleed.

The condition of the lungs is still vitally important so doctors have kept Jason on an oxygen mask all morning. They have also given him a diuretic called Lasix that should remove excess liquid from his body. Jason has used Lasix many times before this hospital stay. In the past few hours Jason has urinated about 50 ounces so the Lasix is working. Last, doctors will be giving Jason some doses of steroids to hopefully counteract any possible inflammation of the lungs.

On top of everything else, Jason has a low-grade fever and the headache that started about a week ago remains constant.

I asked Jason if he has any pain in his chest or any problems elsewhere and all he said was, “No, I am just exhausted.”

These past few days have been terrible busy and Jason has not been at his best in terms of health.  He has difficulty walking, heaves when he exerts himself, hasn't been hungry in days, and has about as much energy as a baby sloth. What is strange is that his poor health now may actually be “good” signs of his bone marrow starting to grow. After all, if your body is going to “start over” it will need to go through some changes; Jason’s weekend has been full of changes.

One doctor was pretty optimistic about his body showing some moments of greatness. For example, Jason’s platelet count is 2,000 today. This is incredibly low but better than the past few counts of zero. Also, Jason’s hemoglobin is 9.6 today. Even considering that he has had a nosebleed his blood level has improved from the past two days when the blood in his transfusions was not remaining inside his body. If it weren’t for the fluid on his lungs, Jason could have possibly been feeling a wee bit better today.

For now, everyone is trying to let Jason rest, as long as he has an oxygen mask, and I am still just trying to take some deep breaths.