Archive | Updates RSS feed for this section

Fevers and the Common Cold

3 Dec

It’s fall.  Cold and flu season!  This is the time of year when I always feel a little more on-guard.  During the spring and summer we relax our crazy mask wearing, hand washing, germ-avoiding practices for what feels like a chance at a “normal” life.  Don’t get me wrong, no matter what season we’re in we are still a little cautious, it’s just not in the forefront of our my mind during those warm, sunny months.

The last few fall and winter seasons since Jody’s surgery have gone really well for him and he managed to escape even the common cold.  We were prepared for the worst but the worst never came.  It was mind boggling to me that he, the immunocompromised transplant patient, could avoid the coughs, congestion and sore throats that the rest of us were experiencing.  I felt relieved that it was me taking on the cold and not him.  God wrapped Jody in the invisible bubble of health that I wished for after his transplant and I praise Him for it.  Unfortunately though, bubbles don’t last forever and Jody’s has popped.

This November was a rough month for us.  One of our daughters caught a cold and was also diagnosed with strep throat.  She missed four days of school because of on-Resting while fighting a coldgoing fevers. Jody and I both caught her cold (thankfully not the strep); mine was mild and resolved quickly, Jody couldn’t shake his.  After a trip to Hopkins for a nasal swab and evaluation he was diagnosed with Parainfluenza 1 (a fancy name for a strain of the common cold).  This required us to make another three-hour (round trip) drive to Hopkins to pick up a rare anti-viral medication (Ribavirin) that we were told wouldn’t be available locally. He was also started on an antibiotic.  Jody seemed to be going downhill fast so we were glad to get him treatment and boy did that Ribavirin knock the virus right out of him!  I was amazed at his turn-around in less than 24 hours (which was great because we were getting ready to host our daughter’s 6th birthday party).  As Jody continued on this antiviral medication, the side effects of nausea and dizziness grew worse, making it hard for him to  do things around the house.  We counted down the days until he would finish his prescription.

Soon after his course of medications were complete, our daughter developed another fever and missed her sixth day of school (I didn’t mention she missed her first day of kindergarten because of a concussion the night before, poor thing). I worried that her strep might have returned since she had just finished her antibiotics a few days prior.  Fighting StrepAfter a trip to the pediatrician’s office we were reassured that it was just a viral infection that needed to run it’s course.  Thankfully that was a 24 hour virus and by the next day she was feeling better.

A few days later (or a week, it’s all running together), our oldest daughter developed a fever.  A week after that our youngest had another fever.  Both girls were coughing and blowing their noses.  Soon Jody began experiencing cold-like symptoms again.  Thankfully he didn’t deteriorate as before but he definitely couldn’t fight it on his own. This week he made another trip to Hopkins for another swab and more PFT’s.  His lung function was down a little and this time his nasal swab tested positive for Parainfluenza 2 (a different strain of the common cold than what he had a few weeks ago).  Tomorrow he will start the Ribavirin again and a different antibiotic.  This time the doctors ordered medication to help with the nausea but unfortunately he’ll have to deal with the dizziness.  There was a brief mention of him possibly needed a course of IV’s in the near future but for now they’ll hold off until they get more culture results.

Through all the stuff going on with Jody and our girls I’ve managed to avoid most of it… until today.  I checked my temperature this morning at work (expecting it to be normal), and it read 101 degrees.  Beside unusual sweating, I felt fine.  This brings our fever count to five over recent weeks and the colds feel on-going.  These illness are minor when compared to those our family has faced in the past, but I’m a firm believer that God still cares about our fevers and colds, no matter how miniscule.

Perhaps I’ve become assuming of Jody’s invisible bubble, maybe even expectant of it.  Either way, I’m committing to focused prayer for healing and protection over Jody, our daughters, myself and our home.

I’m praying for Jody to get his bubble back!

Please join me.

 

 

 

 

 

Advertisements

Kidney Stones

25 Jan

Today it isn’t Jody’s lungs giving us problems, it’s his kidneys.   Jody has an extensive history of kidney stones, so this is familiar to us.  Recently, during our consultation at John’s Hopkins we learned that people with Cystic Fibrosis are at an increased risk for developing kidney stones related to the malabsorption of calcium.  That, combined with a family history of stones, and a diet conducive to stone formation significantly increases Jody’s risk.

During Jody’s last hospitalization in October a CT scan showed he had a few kidney stones.  Since he was asymptomatic and in the hospital for a CF related infection, and in acute renal failure, nothing was done (which was okay).   We had an appointment with a urologist the last week of November, and I clearly remember him saying, “We’ll see you in a year.”  Knowing full well that Jody has never passed a kidney stone and has always needed surgery, I had my doubts that it would be a year until we saw him again.

Fast forward two months.  Today Jody woke up in severe, walking-doubled-over pain, obviously related to his kidney stones (he has learned the classic signs).  He had another CT scan and met with the same urologist we saw back in November.  The plan is narcotics for pain control over the weekend, and medication that could help him pass the stone on his own.  If not, he is scheduled for surgery on Monday morning.  Obviously we would prefer the least invasive route, but given his history we are prepared for surgery.  Please pray that either way the stone would be safely removed, and especially for comfort for Jody until that time.

New Year, New Clinic

1 Jan

As the new year begins we have some exciting news we’d like to share.  Jody has been accepted into the Cystic Fibrosis Center at Johns Hopkins in Baltimore, MD!  What does this mean?  It means that all of Jody’s CF care (routine check-ups, as well as hospitalizations), will be done through Johns Hopkins.  This was by no means a simple task, and it took much determination and persistence to make happen.  You may be wondering why this is so exciting to us, let me explain.

Jody has been a patient of his current CF clinic for seven years.  While we have developed a great relationship with his outpatient CF team, we have been less than impressed by his inpatient care (when he is hospitalized with a CF exacerbation).  In general, this clinic tends to be a little more laid back in their care, and we desire a clinic that is a bit more aggressive.  CF patients (and their families) really get to know the staff at their clinics so this is the hardest part about transferring Jody’s care. For example, when Jody calls his CF nurse he doesn’t need to say whose calling, she knows his voice.  We have received birthday phone calls, cards, and his nurse even crocheted a blanket for our youngest daughter when she was born.  Needless to say, this move is bittersweet as the staff of this clinic will be dearly missed.

So why Johns Hopkins (JH)?  It doesn’t make sense, right?  We’re giving up a 30 minute drive to his current clinic for a 90 minute drive to his new one.  Here’s why:

  • The pulmonary team at JH is ranked #4 in the nation for pulmonary care (and they’re only 90 minutes away from us; we do recognize though that this will be hard when Jody is hospitalized).
  • The average lung function of CF patients at JH is better than that of the three other clinics  in the surrounding areas.  Could this be the result of better care?
  • JH performs lung transplants so it will be easier to start that process when the time comes.
  • JH came highly recommended to us by a colleague of mine whose husband underwent a lung transplant there.  This colleague played a crucial role in getting us accepted into the clinic (M.T. if you are reading this, THANK YOU so much, we couldn’t have done it without you).

We feel so grateful for this opportunity.  Over three months ago I made my first phone call to the Johns Hopkins CF Center and was told that because we have a CF clinic closer to us geographically, they couldn’t accept Jody as a patient.  The lady explained that they treat over 400 CF patients, and that they just didn’t have room for more (despite the many phone calls they get from people trying to get into their clinic).  If you are interested in hearing the rest of the story, and how we actually got Jody in, I’d be happy to share (but feel I need to end this here since it’s getting rather lengthy).

If you think of it, pray for us as we make this transition, and begin building those relationships with the center team members.  We are hoping this change brings only positive results!

Here’s to a happy, healthy, new year!

%d bloggers like this: