Tag Archives: lung infection

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.

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Potassium, Magnesium, & Oxygen

1 Mar

Jody’s hospital Buddy
(and check out his new hat)

Here is an update on Jody, as he remains in the hospital.  The blood gases he had done showed that his CO2 levels were slightly elevated, but not enough to be the cause of the headaches he’s been experiencing.  This is a good thing!

He is continuing on triple antibiotics, and has been tolerating them well.  Thanks to a newer antibiotic, which is less toxic to the kidneys, his doctors have been able to eliminate Vancomycin from his standard treatment.  Jody has had many problems in the past with this drug negatively impacting his kidneys.  When that happens he can’t be given the full doses of the antibiotics he needs to fight the infection (in order to preserve his kidneys).  The new drug that he is receiving in place of Vancomycin is working well, and his kidney function has been staying within the normal range (a huge relief to me, an ex-nephrology nurse).  This is another good thing because he is now getting the full doses of all the antibiotics he needs.  Hopefully they are the right antibiotics to treat the infection.

Today when the CF doctor rounded he came in Jody’s room just as he was walking back from the bathroom (which is in his room and just a few feet from his bed).  The doctor noticed Jody’s shortness of breath and asked him about it.  Usually when the doctors see Jody he’s sitting in bed, or if we’re at the clinic he’s sitting in a chair, and isn’t showing signs of shortness of breath.  I, on the other hand, see him struggling to catch his breath all.day.long as he performs normal activities of daily living.  My heart breaks for him often when I hear him huffing and puffing, say after a shower, or when doing other simple tasks that shouldn’t cause someone so young to become short of breath.  I wish he knew what it is was like to breathe effortlessly, to take a slow, deep breath and fill his lungs with air.  We have this thing we do, him and I, where we try to mimic the other ones breathing pattern.  I try to keep up with his fast, shallow breathing, but it usually doesn’t last very long.  Breathing like that soon makes me feel short of breath, craving a “normal” slow deep breath to really fill my lungs with air.  Jody on the other hand, tries to keep pace with my infrequent (compared to him) deep breaths, and simply can’t do it.  But maybe someday, post transplant, he’ll be able to breathe like me.

Okay, I realize I’ve gone off on a rabbit trail.  Let us return to today when the CF doctor came in.  Having seen first hand how short of breath even a walk from the bathroom to his bed made him, he told Jody he wants him to start using his oxygen more often.  Basically, he wants him to wear it anytime he’s up doing something.  If he’s sitting down, not doing anything, he can take it off.  This is a change from how often he has been using it.  The idea is that if he is making his body work extra hard to breathe (without using oxygen), it’s going to be harder for his body to fight this infection.  It makes sense, but it might take Jody some getting used to: having his O2 tank permanently attached to his back, and needing to fill and replace tanks often throughout the day.  I feel like this change in and of itself is pushing Jody one step closer to transplant, which is a little unnerving to me, if I’m honest.

Originally the plan for Jody’s discharge was this past Friday.  When that didn’t happen, the plan was for discharge today.  Obviously that is not going to happen either.  The hold up is Jody’s blood work, particularly his magnesium and potassium levels, which are too low.  Both of these electrolytes can cause heart arrhythmias when they are outside of the normal range.  Today he was treated with both IV magnesium and IV potassium.  One of the antibiotics Jody is receiving is most likely the culprit for these low levels.  Regardless, the doctors don’t feel comfortable sending him home until his levels are stable, and as much as I want him home, I want him safe, so I’m okay with that.  He’ll have more blood work drawn tonight and probably again tomorrow.  We are hoping that this corrects itself and he can come home before the snow storm they are predicting.  When that happens he will finish up his IV antibiotics here as he has done many times in the past, and will continue to have blood work drawn at home through a home care agency so those levels can be closely monitored.

Thanks for reading this update and following our journey.  Holding onto hope!

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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.

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