It's Amazing How Disruptive a Little Bug Can Be

Not Quite Over

Ray's now been in the hospital 17 days. Amazing that it's taken that long to recuperate from a infestation of a microscopic organism. I'm so grateful that people have made it their life's work to study and kill bacteria otherwise Ray probably wouldn't be here.

He finally seems to be back to his old self. They keep postponing the date of his discharge mainly due to a national shortage of the antibiotic he is on. Today they said they had only seven doses left--a 2 day supply since he gets an IV dose every 6 hours. The pharmacy here has been calling all over the state to try and track down enough for his treatment. There has been some talk about changing the medication to an oral dose but that would mean 6 pills every 6 hours. There is concern as to if his stomach can handle it. The talk is to try the oral medication Monday and send him home Tues if his system can handle it. That would mean he's been in the hospital almost three weeks. It's wild to think he's been here almost half as long as he was here for his transplant.

Transplant News

Today I asked the doctor a question many people have asked me, "Does it look like the transplant worked?" She responded that we are coming up on day 100 where they do testing to see the state of his myeloma. The tests will give us information on his progress so stay tuned.

Meanwhile, Ray's blood counts stay stable which is a good sign. They have gone down from what they were before he got sick, but they are well above levels where a transfusion would be necessary, so he's holding his own. The doctor did say that this infection was a major assault on his new immune system so they will use steroids longer to try to keep the baby immune system from being overwhelmed.

So Here We Be

We've had several adventures during the past 17 days--fevers, delirium, ulcers, cheek swelling, ICU visits, chest pain, MRIs, colonoscopies, EKGs, wild dreams, and so forth. I guess we'll have many things to talk about for years to come.

Tomorrow we will celebrate 31 years of marriage. It, too, has been quite the adventure. It's amazing all that has happened over the years. I'm grateful for the opportunity to have spent 31 years with an amazing man. I'm also grateful to be able to celebrate a 31st anniversary with Ray, the love of my life.

Some People Will Do Anything to Keep From Being Bored

I don't know for sure what it means when it takes a return hospital stay to find time to write on this blog, but that is exactly what happened. Ray was admitted to LDS Hospital Thursday, March 31, with a fever that registered 104 on our home thermometer. Crazy huh!

The Events

I got up at 5:30 Thursday morning thinking I would slip in a couple of hours of work. I heard Ray get up but I didn't think too much about it only that it was strange he hadn't gone into the bathroom. I found him in his office 20 minutes later. He looked like he had fallen asleep on his chair but he didn't respond to me calling his name. When I touched him I could tell he had a high fever so I took his temp (104), called the hospital to tell them we were coming up, and called my son-in-law to come help me get Ray into the car. We were on the way to our current adventure.

They did blood cultures the minute we got him up to the 8th floor and then started anti-biotics. He was pretty out of it most of the day and tried to get out of bed several times, pulling on IV's and oxygen tubes. He responded to questions with grunting. Our son, Adam, came up and spent what turned out to be a very long, hard night with Ray.

Friday Ray seemed a little more oriented to what was going on. He knew he was in the hospital and when asked if he knew why he was there, he'd reply, "Fever?" He continued to run fevers all day ranging from 102-104. They kept him on IV tylenol and also kept adding more types of anti-biotics to his IV. They said until they identified the bug in his blood stream they would use the kitchen sink approach and keep throwing anti-biotics at him hoping that one would stop the bug from growing. Our daughter, Wendy, came and spent another long night with Ray.

At some point during the night, Ray started bleeding. At 8am Saturday morning, Wendy called me and said they were transferring Ray to the ICU. In a way I was relieved because I knew Ray needed one on one nursing care and we, as a family, were getting exhausted trying to assist with his intense care.

While in the ICU, they scoped him and found the bleeding was coming from an ulcer. Also, the micro results came back identifying the bug as listeria. They told us listeria has an affinity for the brain and sometimes the heart, but is very susceptible to penicillin. Therefore it is considered a nasty bug that is highly responsive to anti-biotic treatment. The infectious disease doctor asked a lot of specific questions about Ray's diet explaining that he most likely ingested the bug. Also, she said because of it's affinity for the brain, they have to take into consideration that he might have some meningitis because of his unresponsiveness Thursday and part of Friday. So that means a four-week round of IV anti-biotics. They said they could transition those to be received at home but there was no indication of when he might leave the hospital.

Chad, our oldest son, came up to spend the day with Ray in the ICU and Adam pulled the night duty again. My kids are amazing. I have no idea what I would do without them.

So Sunday afternoon Ray left the ICU and returned to the 8th floor, back to the room he started in, which was great because we had left his phone charger in the room. And sure enough the phone charger was plugged into the wall where we left it. I guess the nursing staff took it seriously when I said save his room, we'll be back.

Today is Tuesday. We continue with the IV anti-biotics although Ray has thrown another blip in the road. Today, after breakfast his right cheek started swelling intensely, just below the ear. They first suspected an allergy to penicillin especially when they started a new dose around noon and the swelling started again. Both swellings coincided directly with the time he ate. They did an MRI and changed the anti-biotics. He just finished some jello and a drink and the swelling started again. So he's once again the mystery of the day! They're thinking maybe a blocked saliva gland but no one can say for sure.

A Glimmer of Normal

When Ray returned from radiology today he started teasing the nurse. That's the first I've seen him act like himself since last Wednesday. He asked a doctor about the doctor's recent vacation--something they had talked about when he was here for transplant. Ray told us about his funny dream which made his cheek swell up.

Every day a little improvement. Yea!