Tag Archives: antibiotics

Infection… but no rejection

26 Mar
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Pre-bronch selfie

Since I last wrote, Jody had his six-month post-transplant bronchoscopy.  In case you forget, this is a procedure where he is put to sleep so they can introduce a scope, via his mouth/throat, into the lungs.  His lungs are examined and “washed” with saline.  Tissue samples are taken to check for rejection.  It normally takes about two days until we get the results of this test back.

Like his three-month bronch, this one showed no rejection!  Praise the Lord for that!  It did however show that he is growing a bacteria called Pseudomonas Aeruginosa.  This came as a surprise (to us)… sort of.

Pseudomonas is a bacteria that Jody harbored in his old, CF lungs.  Once he got it, it never went away.  That’s sort of the thing about Cystic Fibrosis.  They have thick, sticky mucous in their lungs and once bacteria gets in there it finds a home in the mucous and is hard, sometimes impossible, to eradicate completely.  This bacteria is typically controlled with inhaled and oral antibiotics, however, when it flairs up (becomes more numerous), one experiences symptoms and is said to have a lung infection, or a CF exacerbation.  Normally this calls for IV antibiotics to again lower the number of bacteria.  Those of you who have been following Jody’s journey before transplant know that he has spent his fair share of time in and out of the hospital fighting these frequent lung infections.  In the past it became clear when Jody had an infection because breathing became a little more labored (as his lung function decreased), cough and mucous production increased, and Jody became much more tired.  Those were his classic signs that it was time for another hospitalization and IV antibiotics.

We had been warned that it’s not uncommon for some of those old CF bacterias to make their way into the new lungs.  It could have been sitting in his trachea (or elsewhere) when the new lungs were placed, and eventually made its way down into the lungs.  Actually, we found out that a very small amount of this bacteria showed up on his three-month bronch (which they didn’t tell us at the time), but that it was too small to treat.  Now, three months later, it’s grown to a quantity worth treating.  We were surprised to hear of this infection because Jody feels great; breathing is good, he has no cough, no mucous, and no drop in energy.  He has none of the “classic” signs of an infection that we’ve grown so familiar with identifying.  I guess that’s the beauty of new lungs.

In case you’re wondering, this does not mean Jody’s CF has returned.  Thankfully, this cannot happen.  Jody will never again have Cystic Fibrosis in his lungs.  This means that he no longer has that thick, sticky mucous which bacteria love so much.  He should be able to get rid of the infection completely (yeah!).  He is treating with oral and inhaled (nebulized) antibiotics for three weeks; no IV’s, no hospitalization!

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Post-anesthesia and breathing well

Here is a picture of Jody after the bronchoscopy, still a little drowsy from the anesthesia.  I share this photo because even though he’s in and out of sleep, you can see on the monitor, if you click on the photo (middle number in blue) that his oxygen saturation is at 99% on room air (no oxygen).  Seeing that never gets old!

Aside from the infection, the latest issue we are dealing with is the possibility of Jody haven broken the internal wire holding his sternum (chest) together.  Over the last week or two he’s been noticing pain in the center of his chest, that feels shallow, like somethings rubbing.  In certain positions he moves he can hear a “popping” sound.  These signs point to a fractured internal wire.  Next week we have an appointment for a CT scan of his chest which will tell us if our speculation is correct.

Like us, your next question might be, how will they fix that?  Honestly, we’re not really sure.  When Jody asked his transplant coordinator this question, her response was, “I don’t want to tell you because I don’t want to give you anxiety.”  This response produces almost more anxiety because it sounds like the fix for broken wires is pretty ugly.  Of course, I imagine the worst; having his transplant incision opened to remove or replace the wires, needing chest tubes, needing the thoracic epidural again, pain issues, etc..  Most likely it won’t be that bad,  but it would have been nice for the coordinator to give us a better answer.  Who knows, maybe the wires are perfectly intact and there’s another reason for the pain.  As always, I’ll keep you updated as we learn more.  We appreciate your prayers about the infection and the possible broken wires.

Five Dreaded Words

16 Aug

“I think I’m getting sick.”  Those are some of the most dreaded words for a CF wife to hear.  There is a lot of physical, emotional, and financial stress behind those five words (physical, as in coordinating childcare, getting things done at home, rotating between home, hospital, and work, etc.).  When Jody speaks those words I’m usually not surprised and often it’s something I’ve wondered about myself.  It takes a conscious choice however, to move from denial of another infection to accepting the inevitable, and seeking treatment. This begins by making a dreaded phone call to Jody’s CF team, alerting them to his symptoms and our suspicion of another infection.  Such was the case this week.  We enjoyed the entire month of July free of infections and hospitalization, for which we are oh so thankful!  Suspecting our infection-free period was coming to an end, Jody made that dreaded phone call this Tuesday and was seen in the CF clinic on Thursday.

As a result of Jody’s complicated (antibiotic) allergies with anaphylactic reactions, we have been told in the past that he is no longer allowed to start IV antibiotics from home.  Instead, his team feels he needs to be monitored closely, in a hospital setting, to ensure his safety when initiating these powerful drugs.  Because of this, we left for our Hopkins appointment on Thursday with our bags packed, prepared to stay, but hoping to return home.  And that’s just what we did!  Surprisingly enough, Jody’s doctors decided to put him on the same antibiotic regimen they used in June (Zyvox, Zosyn, & Colistimethate), and felt he could begin them from home since they were well tolerated before.

Jody's "Luggage" (O2 tank and a continuous IV pump).

Jody’s “Luggage” (O2 tank and a continuous IV pump).

Yesterday morning all of his supplies were delivered.  I inserted and dressed the needle in his chest (he has an implanted port for medication administration), and with the Epi pen nearby, he began all of his antibiotics, thankfully without any difficulties or reactions.  For the next two weeks (at least), Jody will have some extra “luggage” to carry around, as he puts it, referring to a continuous IV pump used for one of the three above drugs.

Jody's continuous IV pump

Jody’s continuous IV pump

The advantage to this pump is that he doesn’t need to wake up early and during the middle of the night to give himself his medications since it will do it automatically while he sleeps.

We’re really glad Jody was able to avoid another hospitalization.  I work 24 hours this weekend and it gives me much peace of mind to know that he will be at home, relaxing, instead of in the hospital where I would be missing out on his care and physician visits.  Still I wish I could be home with him this weekend but such is the life of a CF wife.

Completely off the subject, the wait for transplant continues.  August 25th will mark five months of being active on the list.  After getting the first call for his new lungs only a month after being listed (which turned into dry run 1 of 2) we naturally assumed transplant would happen sooner rather than later.  Honestly, for a variety of reasons, we truly believed it would happen in June or July.  Our oldest daughter turns six August 24th, and will begin kindergarten the next day (8/25), so we are now hoping that transplant will at least hold off for this, especially since she has a lot of anxiety about starting school.  It’s hard to think that because transplant hasn’t happened yet we will miss out on a lot of her kindergarten experience when the time does come, and it also poses a lot more work for our parents, who do not live in our school district, and will need to transport her to and from school everyday.  Our youngest also starts preschool in the beginning of September so she will need to be transported back and forth as well.  This is one of the reasons we hoped transplant had happened already.  On the flip side, we understand that in order for Jody to get his new lungs it means the loss of another life, and that’s not something we want to rush, especially just to make our schedule more convenient.  Schedule aside, Jody is ready for his transplant.  He’s tired of the hassles of Cystic Fibrosis, the struggle to breathe, the inability to do the things he enjoys, and of the need for continuous oxygen.  While we may not understand it, we trust that God’s timing is better than ours, and hold firm to the belief that Jody will get his new lungs in God’s most perfect time.  Until then, please continue to keep him, and our family in your prayers.

 

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Rare Moments

18 Jul

It’s been a few weeks since I’ve given you an update on Jody and often no news is good news.  June was a rough month for him, spending a lot of time in and out of the hospital or home sick and on IV antibiotics.  Typically when Jody finishes up a three week course of these antibiotics (assuming he’s been on the right combination of them), his energy returns and he starts feeling a little better.  Usually his PFT’s (lung function studies), improve slightly as well.  This go-round was no different.  In July, the girls and I appreciated seeing him spend less time in bed sleeping, and more time awake and active (as active as one can be in end stage lung disease where every activity takes your breath away).

One day this month the four of us even spent a relaxing day at a friends in-ground pool.  Although Jody was tied to his O2 tank, he could leave it on the side and at least stand in the pool, by the edge, and get wet.  The girls enjoyed having him there, even if he couldn’t swim with them, or throw them in the water like old times.  That day Jody took his afternoon nap on a lounge chair under an umbrella, while the girls and I enjoyed a rare (as of late), fun summer afternoon.  While it seems everyone around us is enjoying summer to the fullest, free and unhindered by disease, we are learning to be thankful for these rare days, hours, and moments when we can forget about the past and future, so full of uncertainties, and focus on the present.  Moments like these are good for the soul.

As the saying goes, all good things must come to an end, and this is especially true when speaking of Cystic Fibrosis.  We’ve noticed a pattern for Jody where after about three weeks of IV antibiotics he starts feeling pretty good, but sadly it only lasts about three or four weeks.   Soon “good” turns into “okay,” and okay turns into “lousy,” and lousy turns into a hospitalization.  Yesterday Jody had a routine check-up in the CF clinic and we could classify him as being in the “okay” category.  He’s been feeling a little more short of breath, his lungs are a tad more junky than normal, and his PFT’s are a little down (not quite as bad as they were in June).  If left untreated, the chances are Jody will quickly move from “okay” to “lousy” and I already told you where that will land him.  Hoping to prevent this, the doctor ordered oral antibiotics (in addition to the ones he takes daily to hold the chronic bacteria in his lungs at bay).  She also wants him to increase his oxygen to 6L with activity (showering, taking care of our girls, climbing steps, etc.).  The fact that he is now requiring 6L of O2 should bump up his score on the transplant waiting list.  More oxygen requirements also means bigger, less convenient tanks for going out.

We had been hoping to go out for dinner to The Cheesecake Factory at Baltimore’s Inner Harbor following Jody’s appointment, if he felt up to it.  The last time we did this was a little over a year ago to celebrate a good appointment.  We knew this wouldn’t be a celebration, but rather, one of those rare times when we live in the present, forgetting everything else going on in our lives, and enjoying the simple moments in life.  And so we did, big oxygen tank and all!  We even took a very short walk after dinner.  I have been working on contentment, in suffering and in waiting, and as we stood there, overlooking the harbor, hand in hand, oxygen along side, I felt content.  I felt thankful, for the health Jody does have, and for the oxygen tank which allowed us that moment.  A positive attitude and contentment in this situation doesn’t come easy; those “lousy” days get the best of me sometimes, but I think it’s those few “good”, I mean really good, days/moments that get us through the bad.  It’s also the hope that eventually, after transplant, the lousy days will be few and far between as they are replaced with days filled with pure goodness.  Until that time comes, we’ll continue to relish the rare moments in our present life that make it enjoyable and endurable.  I hope you will too.

 

 

 

Home After Short Stay

19 Jun

The last few days of medication changes for Jody went off without a hitch so he was able to be discharged yesterday (woo hoo!).  One thing we found out since my last post is that when he was in the hospital last week he apparently tested positive for the Rhinovirus (the virus which causes the common cold).  This could also explain the excessive fatigue he was experiencing.  Most likely it was a combination of both this virus and the antibiotics which were not effectively fighting the bacterial infection in his lungs.  In Jody’s case the Rhinovirus could take up to six weeks to go away, but the bacterial infection should start to improve.  In fact, Jody’s PFT’s  (lung function studies) yesterday showed an increase of five percent from a week ago (22% then, 27% now).  Hopefully things will continue to move in the right direction.  He does already seem to have a little more energy than last week so I’m thankful for that.

Thank you for the anniversary well wishes.  We were able to make the most of it despite our surroundings.  It was nice to simply spend the day together (without the kiddos).  Jody could have been transplanted and kept sedated on a ventilator in which case the day would have come and gone without any form of celebration whatsoever.   We’ve decided that since this anniversary was especially low-key, we’ll just have to celebrate our 10th in a BIG way!

Celebrating 9 years of marriage, hospital style.

 

 

Hotel Hopkins Celebration

17 Jun

Well, my gut feeling was right.  Last night Jody was re-admitted to the hospital which means we’ll be celebrating our 9th wedding anniversary (today) here at Hotel Hopkins.  Jody joked that it’s too bad he can’t get a pass to take his IV pole and go to The Cheesecake Factory for a date.  In due time I guess.  We’re just thankful to be together.

The reason for this admission is because Jody simply isn’t improving on his current antibiotics.  His sputum culture from last week is showing that one of the bacteria in his lungs is resistant to Meropenem, one of the three antibiotics he is taking.  This would explain why his condition isn’t improving.  Let me explain this process a little more for those of you non-medical readers.

Every time Jody is admitted to the hospital (and usually even for routine clinic visits), the doctors request that he give them a sputum sample from his lungs.  This sample is then sent to a lab where (in Jody’s case) it grows bacteria.  Once the bacteria is identified, further testing is done to determine which antibiotics will be effective in treating the bacterial infection.  This process (growing bacteria) is slow and the final results can take a week or more to come back. Until those culture results are finalized, choosing the right antibiotics can be a bit of a guessing game.  When Jody was discharged last week the final results of his culture were not back yet so he was started on a combination of antibiotics that have worked for him in the past (since the bacteria in his lungs is usually the same each time).  In my last post I mentioned that Jody didn’t seem to be getting better and that I questioned if he was on the right antibiotics.  It turns out he wasn’t.  Because of Jody’s allergies his team of physicians have decided against allowing him to start IV antibiotics at home.  Instead, he was asked to come into the hospital so his medications could be changed and doses adjusted under supervision.  The plan is to continue the oral Zyvox, switch the IV Meropenem to Zosyn, and increase the dose of IV Colistimethate (I’m including these names more for our records than because I think you care about the specifics of his antibiotics).  As long as these medication changes are well tolerated, he should only be in for a few days.

Now, a message for Jody:

Jody, since this is our anniversary and all, I’d like to say that you are awesome!  I have watched, countless times, as you’ve gotten stuck with needles, big and small, had nearly every square inch of your body poked and prodded, been tested, xrayed, endured great pain, felt lousy, struggled to breathe (and continue to do so), given up things & hobbies that you enjoy, sat on the sidelines, pushed yourself and fought… and continue to fight, all because of Cystic Fibrosis.  And what I find most inspiring is that you do it all without complaint.  I know it can’t be easy to walk in your shoes, but you keep going, putting one foot in front of the other, and you keep your head held high.  You impact people wherever you go.  You’re climbing this mountain with great determination and perseverance, and I know your efforts will be rewarded.  I’m so blessed to walk this journey with you, thank you for choosing me.  I’m leaving you with a song* that speaks to where we are in life right now, and I hope it will encourage you in the fight to know that I will always be by your side.  Happy 9th anniversary, I love you!

P.S.  If you’re a reader who enjoys pictures, you can sneak a peek of a few more wedding photos by clicking here.

 

*Angel By Your Side – Francesca Battistelli

Gut Feelings

14 Jun

This post will be brief, but I want to update you on Jody.  He was discharged from the hospital on Wednesday (6/11), after a six-day stay.  Although he needs it, we still do not have a CPAP machine at home because we are waiting for approval from our insurance company (it frustrates me greatly that insurance companies dictate health care so much).  Hopefully this will be straightened out soon so Jody can get the treatment he needs.  One good thing to report is that we were able to switch out the O2 compressor we had at home (which only went up to 5L of oxygen) for one that is high flow (goes up to 10L).  It’s nice to know that we now have “extra” O2 should Jody need it.

In the last three days that Jody has been home, he’s been spending a lot of time sleeping and has been getting a lot of chest pains (this has been a chronic problem, which the doctors describe as irritation in the lining of his lungs).  Although this is an ongoing issue for him, the pain seems to increased right now.  I also think he looks sick, and my gut feeling is that he’ll be back in the hospital next week.  It could be that he’s not on the right combination of antibiotics to treat the infection in his lungs, so they might need to change them up a bit.  This was the problem we had last fall when he was hospitalized about four times until they finally found the right concoction of drugs to knock the “bugs” out of him.

Jody does not have much bounce-back left.  I feel like he’s walking a very fine line right now.  He really needs this transplant before he becomes too sick to get it.  So in addition to the 30 Days of Prayer for Jody prayer challenge, please pray that his current condition would improve so he can avoid a repeat hospitalization next week, or further deterioration prior to transplant.

Carbon Dioxide & CPAP

8 Jun

Hello.  I thought I’d give you another update on where things stand with Jody.  He’s still in the hospital and has been getting his antibiotics (Meropenem, Colistimethate, and Linezolid) without difficulty.  Hopefully this combination will be sufficient to knock the “bugs” out of him.  He had the blood gases done that I talked about in my last post, and they confirmed that he’s not getting rid of enough carbon dioxide (CO2), particularly when sleeping.  To explain this very simply, when we breathe, we inhale oxygen, and exhale CO2.  Because of Jody’s advanced lung disease his body has a hard time keeping his airways open well enough at night for the CO2 gas to be expelled properly.  Instead, it builds-up in him, and is primarily manifested in the form of headaches when he wakes up.

Jody’s new “CPAP” mask

Treatment for this problem is the use of CPAP (Continuous Positive Airway Pressure).  This is a mask Jody will wear to sleep which will deliver both oxygen, and a continuous pressure into his airways, forcing them to stay open so the CO2 can be expelled efficiently.  This will also help the oxygen to more effectively get to where it needs to go.  You may have heard of CPAP before because it is the same treatment used for those with sleep apnea.  Jody will wear the CPAP mask here for a few nights and then will have repeat blood gases to see if it was effective in getting rid of his CO2.  If not, they will make changes to the settings (the pressure) and try again.  This looks really uncomfortable to sleep in, and we’re told might take some time getting used to.  I told him he looks like an O2 superhero.  All kidding aside, pray that this adjustment goes smoothly and Jody will be able to sleep well and wake up headache free.

Upon discharge we are also going to need to change the portable oxygen set-up we have at home for Jody to use when he goes away.  Currently he uses a system that only gives him oxygen when he takes a breath in (not a continuous flow).  With this method he can get about five hours use from each tank with it set at 2L.  The problem is he’s just not getting enough oxygen.  He needs the continuous flow, and more like 4L (which is what he uses at home).  This means we are going to need to exchange our small portable O2 tanks in for the big ones, and at 4-5L of continuous flow it won’t give him a lot of time to be away from home.  It feels like he’s become home-bound.  Our lives have changed a lot this past year and it sounds like this is just one more thing to get used to.  I think this (combined with the new need for CPAP), makes him all the more ready for transplant.  It’s so hard to watch him go through all of this, but truly, he takes it all in stride.

There has been no talk of discharge yet, and honestly, we haven’t even asked about it.  We’ve learned to be patient, and that even if they did give us an estimated discharge date it would probably change when the time came.  I have been able to spend the last four days at Jody’s bedside and it has been great.  Today I will return home to uphold my commitments to work.  One great thing about Hopkins is that when I leave him here, I always know he’s in good hands.

Germs, Infection & Antibiotics

10 Apr

This week has been a little bumpy.  Our youngest daughter is just over a cold which required antibiotics and two different inhalers, five times a day (not uncommon for her when a cold strikes).  While this in itself might stress a parent, I am unfazed.  Instead, my stress comes from fear of this cold spreading around the family and to Jody in particular.  I know that if my girls and I get a cold we will be okay, if Jody gets one, he may not.  Hand sanitizer fills almost every room in our house.  We practice frequent hand washing, and I wear masks when caring for our sick kids.  If I think there is even a slight chance that I might be coming down with something, I sleep on the couch (not because Jody asks me to, but simply because I don’t want to take any chances of making him sick).  Despite all my crazy attempts to keep germs from spreading, they still sometimes do.  This is one of those times.

Jody’s been showing signs of another lung infection.  Sadly, he’s only been off IV’s since mid March when he completed a three-week course of antibiotics.  It’s disheartening for him to have a repeat infection so soon, but, this is the nature of his disease.  Jody was seen in CF Clinic on Tuesday to evaluate his symptoms.  His pulmonary function test showed his lung function has dropped to 25%, an all-time low for him.  He has also lost some weight.  We were completely prepared for a hospitalization, and were quite surprised that his team felt he could start another course of IV antibiotics here at home instead.  The plan was to try a different group of antibiotics than the ones he was on three weeks ago, one being completely new to Jody.

Yesterday afternoon a visiting nurse came to our home to help Jody with getting started on the above meds.  She stayed for a full hour after the new medication was completed to monitor for any side effects.  When there were no signs of a reaction, she left.  Later on Jody’s eyes started to burn, his chest felt tight, and his throat began to feel scratchy, and he was having a hard time staying awake.  Jody has a fairly recent history of an anaphylactic reaction to an antibiotic, and while this wasn’t that, we knew this was not something to mess around with.  And so… we didn’t escape hospitalization after all.  Jody was admitted to Hopkins last night.

After a full night of IV fluids, some Benadryl and IV steroids, he is feeling much better this morning.  As it turns out, the doctors believe this reaction was not from the new medication but from one he has had in the past.   This medication, Meropenem, is in the same family as Cefepime, the one that caused his anaphylaxis before.  You might be thinking, “Then why did they give it to him?”  Well, under the supervision of an allergist Jody was desensitized to this drug and has safely received it since then.  He even had allergy testing done which showed he is not allergic to it.  Because of this, the doctors felt he could safely be given Meropenem, Cefepime’s “Cousin.”  It turns out they were wrong.

Jody absolutely needs IV antibiotics to fight his lung infection so his team of physicians are consulting with an allergist again to devise a plan that will work for him.  This may or may not include desensitizing him to Meropenem.  For right now he is getting oral and inhaled antibiotics.  We pray they can find the right concoction of drugs that his body will safely accept, and will work to treat the infection.

Watching Jody leave last night was hard, but watching our five-year old as she watched him go was heartbreaking.  She stood at the door, crying, saying, “Daddy, I don’t want you to go to the hospital, I don’t want you to go!”  And she cried for a few minutes after he left.  It was the first time I saw her visibly upset over a hospitalization.  Our youngest child, who is three, has trouble with her speech so she isn’t able to tell me how she feels about this, and honestly I don’t think she understands too much of it.  Every now and then she will randomly say, “Daddy, hospital?” in her cute mispronounced way that lets me know she’s missing him too, and wondering why he’s not here.  Any parent wants to protect their children from hurt and pain, and so it saddens me that in this case, I can’t (in fact I know it’s only going to get worse).  Since I can’t change the situation, I can only do my best to ease the hurt.  One way I have done this in the past is to take some of our girls favorite bedtime stories to the hospital and make a video of Jody reading to them.  The girls always get a big smile when I say, “Daddy’s going to read you your bedtime story tonight,” and we open up my laptop to watch him on video.  Sometimes they even say goodnight over Skype.  I am glad that Jody is safe and being well cared for, but I hope that this hospitalization won’t be too long, so that he can come home and read those bedtime stories in person, with two little girls sitting by his side.

The Break’s Over

26 Feb

Many of you probably saw on our Jody Needs Lungs Facebook page that Jody was admitted to the hospital yesterday.  This post will fill you in on all the details.

People often ask me how Jody is doing, and over the last few months my answer has been, “Pretty good, all things considered.”  We’ve very much enjoyed the break from the hospital after spending so much time there late summer/early fall.  Naturally we knew this break wouldn’t last forever and sadly it’s over, at least for now.

Two weeks ago Jody had an appointment in the transplant clinic.  At that appointment his PFT’s (pulmonary function tests) were close to 30%.  He was feeling a little tired but otherwise okay.  Since then the tiredness has increased.  We know that this can be a sign of a CF “flare-up” but it is so easy to justify that symptom away, chalking it up to him being more active.  Nonetheless, we kept watch.  We’ve since noticed that he’s been coughing a little more, feeling more chest tightness, headaches, night sweats, and even had some blood-tinged sputum.  Those things combined, we could no longer deny the inevitable, and made the call to the CF clinic.  Jody was asked to come in that day and to pack a bag because, based on his symptoms, he would probably be staying.

Jody’s PFT’s in clinic yesterday revealed a 4% drop (now at 26%) in a matter of two weeks time.  This is a little alarming, especially when combined with the symptoms described above. The doctor was also a little concerned about his complaint of headaches, especially at night.  Once again they suspect a build-up of CO2 (carbon dioxide).  He currently sleeps using 2 liters of oxygen via nasal cannula, but it might not be enough.  They mentioned possibly even using CPAP at night to keep his airways open should it be warranted.  And so… to figure this all out, Jody once again finds himself at “Hotel” Hopkins.

The plan right now is round-the-clock triple antibiotics to fight the infection in the lungs, and arterial blood gases to confirm if his CO2 level is indeed too high.  In addition to that he gets his nebulizer treatments two or more times a day, chest physical therapy and regular physical therapy three times a day, blood work, chest x-rays, visits from lots of doctors (this is a teaching hospital), and visits from the CF team, just to name a few.  Even his physical therapist commented this afternoon on how many people were in and out of his room this morning.

One other thing I should mention is in regards to Jody’s future lung transplant.  There seems to be disagreement among the CF team here as to whether or not Jody should be made “active” on the list.  Some feel the time is now, while he is healthy enough to withstand the surgery, and others feel he should wait, so as to not start “the clock” (on Jody’s life) prematurely; hoping he might bounce back from this infection, buying him more time.  It’s a fine line to walk, and I can argue both sides.  Thankfully, I know we’re in good hands, that they’re keeping a close watch, and I pray that God himself will make it quite clear when the time is right.

There is no way of knowing how this infection is going to play out.  It could improve with the current antibiotics and we could get another break from hospitals.  Or, on the contrast, it could be the beginning of more to come, which would indeed push us one step closer to transplant.  As I’ve said before, only time will tell.

Now you’ve been updated and know a little better how you can pray for us.  Thank you to those of you who have already been doing so, it is always appreciated.  Thank you also for reading.  I’ll keep you updated as able and if anything changes.

Good News at Last

3 Oct

Finally, some good news to report!  Jody has been home from the hospital for a little over a week and at last he is on an antibiotic regimen that seems to be working; he’s feeling a little better, and his kidney function is stable.  After two months without much improvement, it’s wonderful to see things turning around, however small or short-lived they may be.  I don’t mean to give the impression that things are great, but we have come to appreciate small improvements, and don’t expect greatness.  All things considered we had a good week, with our stress level thankfully a little lower.  Best of all, this week I didn’t feel like I was watching Jody suffer as I had a few weeks earlier.  How refreshing it was to watch him a little more “active.”  I’m so thankful these antibiotics are doing their job!

We had a follow-up appointment at Hopkins on Tuesday and unlike other times over the past two months, we didn’t pack a bag expecting to stay.  It was wonderful to ride home with my husband (since I’m accustomed to leaving him there and driving home alone).  The plan for now is to continue on these antibiotics for one more week.  Truthfully though, I’m nervous for him to come off them.  I love this small turn-around and am scared to see him turn back around in the opposite direction.  The fact that we are heading into cold and flu season also makes me quite paranoid.  I wish the only thing I had to worry about was our girls picking up colds at preschool.  Period.  Instead, I worry about the way that these simple colds will wreak havoc on Jody’s lungs and in turn, our lives.  As much as I would like to keep my family in a bubble of protection, I know I can’t.  All we can do is practice good hand hygiene, and pray that this fall/winter will be merciful on us.

You might remember from a previous post that the doctors wanted to do an overnight study on Jody to measure his oxygen level while he sleeps.  Well, the results are in.  As we suspected, his oxygen level is dropping too low when he sleeps.  This is most likely the cause of those headaches he wakes up with nearly every day.  To fix this problem we’ve welcomed a new member into our home, and Jody has affectionately named her, “Flo” (aka an oxygen concentrator).  This means that from now on, he will use oxygen while he sleeps.  Adjusting to the nasal cannula (the prongs that go in his nose to deliver the O2), wrestling/getting tangled up in the tubing, and the noise of the concentrator are taking some getting used to, but this morning he woke-up headache free!

“Flo”

In addition to oxygen at night, the doctors recommend Jody begin using it with activity as well.  While at our appointment on Tuesday he did a six-minute walk study with a physical therapist, which was required as part of the transplant work-up.  As we expected, it revealed that he is dropping his oxygen with activity too.  The question then becomes, what is activity?  Does he need oxygen just to walk up the stairs at home?  Is it warranted if he picks up our daughters from preschool?  Does he need it to walk into church, even if he won’t need it once he’s there and sitting down?  The thought of going out in public wearing oxygen is not easy for Jody.  He feels self-conscious, and fears the looks, the sad faces, and the fact that he can no longer hide the battle going on between him & his lungs.  Please pray that God would give him the courage he needs to take this first step, and that people would be kind and accepting in return.

As you can see, even though we’ve had a small turn-around this week, we’ll never really go back to the days when CF was a distant thought in our minds.  Instead it now plays an active role in our lives, often dictating what we do and don’t do.  Even so, we continue to enjoy the small moments in life and give thanks to God for each and every day!

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