Tag Archives: antibiotics

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!

The Hard Truth

17 Sep

Today was hard, really hard!  And so is writing this post.  This afternoon Jody had what was supposed to be his post-hospitalization follow-up in the CF clinic.  You might remember from my last post that he had been on a mediocre antibiotic regimen because his kidneys couldn’t tolerate the antibiotics he really needed to fight the infection in his lungs.  In between then and now his kidney function declined even more and they had to stop all but one of the antibiotics.  This bacteria, which really Jody has been fighting since July, has taken its toll.  A month ago Jody’s lung function was at 32%, today it is down to 28% (which is the exact number I was guessing ahead of time).  He is now short of breath with almost any activity, to the point that over the last few days I have felt like I was watching him suffer.  Treating this infection is complicated by Jody’s allergies, decreasing kidney function, and finding the right concoction of antibiotics.  To be honest, the doctors are a little unsure why he hasn’t been able to get better.  The concern is that if he doesn’t get better, he could get worse; I’m talking really sick.

Obviously this is not the direction any of us want things to go, his doctors included.  But we need to be prepared for the worst.  This lead the doctors to give us “The Talk.”  This is the talk I have been dreading since the day I fell in love with Jody.  Today we were told it is time to begin the transplant process.  Why was this so hard to hear?  Isn’t getting a transplant a good thing?  Well, statistics show that the outcomes of lung transplants are not too great (which is why they like to wait until it is absolutely necessary, sort of a last resort).  The average lung lasts five years, and only about 50% of patients make it that far out.  I don’t think I need to mention what the alternative to a transplant is, you can image for yourself.  Jody and I always knew this time would come, but after seven years of near perfect health we never dreamed his decline would happen so fast and when our children are so young.

Adjusting to this decline in health has been really hard on both of us.  It feels like our lives are being ruled by Cystic Fibrosis.  In addition to not being able to breathe, Jody feels like he can’t do anything (and really he can’t right now).  I think sometimes he also feels like he is letting our family down (even though he knows this is not something he can help).  I feel like I carry the weight of the world on my shoulders, being pulled in every direction.  I walk around in guilt for not being able to be there for my husband because of my responsibilities to our children, and to work.  It pains me to leave him lying time after time in the hospital without me, his spouse, at his bedside.  I detest  having to work when he is sick, and would much rather be taking care of him, but it would do us no good if I lost my job.  I feel guilty for breaking routines and sending my children here, there and everywhere.  I feel guilty for the burden being placed on those watching our children over and over.  My heart breaks for our girls who are too young to understand, and sometimes become upset when Daddy can’t take them outside or pick them up, or even read them a book.  And my heart breaks for Jody who is so young and talented, yet his body (or parts of it) is failing him.

This post may seem a little down, but it’s real, it’s raw, and it’s where we’re at right now.  We’re struggling… but we’re surviving.  We are trying to hold onto hope for our future.  There are those who undergo a lung transplant and do well, who live lives they couldn’t dream of before.  Lord let this be Jody!

If you haven’t figured it out already, Jody is back in the hospital.  We speculated this would happen and packed a bag today, “just in case.”  Jody jokes that we bought a Time Share at Johns Hopkins.  The doctors are going to start giving him stronger antibiotics as his kidney function allows.  But… if in time he continues to get worse, or if push comes to shove, they will forget about his kidneys and the damage being done, and they will hit his lungs as hard as they can.  If this becomes necessary and his kidneys fail, he would begin dialysis and list for a double lung and kidney transplant.  We don’t anticipate this happening but it was a part of “The Talk” we had today.  While in the hospital they will begin some of the preliminary steps toward getting on the list.  One positive thing I would like to add is that the doctor today was excellent!  He was kind, even comforting Jody when he became visible upset.  He took his time, and was patient in answering every last one of our questions.  He even checked back on Jody before he left for the day, just ” to see how we were processing all of the information he gave us.”  If we had to have “the talk,” I’m glad it was with him.

Please continue to cover us in prayer as the Lord leads.  In truth, we just want our “old” lives back.

Desensitization

1 Aug

This afternoon Jody was finally moved to the ICU so desensitization could begin.  This is the process of re-exposing him to one of the medications suspected of causing his anaphylactic reaction.  The procedure begins with small, gradually increasing doses of the medication and will take eight hours to complete.  Every 30 minutes for the eight hours his dose is increased.  Should any of these dose increases be missed, the entire procedure needs to be restarted.  This is one of the reasons they decided to move him into the ICU.  There, Jody is his nurses’ only patient and she can keep a very close watch on him, as well as keep up with the frequent dose/bag changes (she has 14 bags of the antibiotic to hang throughout this process).  The hope is that after this is finished his body will again accept this medication without complication.

Jody is about four hours into this procedure and so far things are going well.  But then again we really don’t know if this is the med that caused the anaphylaxis in the first place.  The problem of identifying which was the culprit is that they were given around the same time; one, the new one, was given orally, and the other, the old one, was given intravenously.  This desensitization process is being done on the old (meaning, he’s had it many times in the past), IV drug.  At this point they have decided not to reintroduce the oral drug, and will replace that one with another IV one.  It is unfortunate though because the oral antibiotic is said to work better at treating the infection then the IV med they are replacing it with, plus, there is less risk for damage to the kidneys.  And some of you know that Jody has a history of acute renal failure related to toxic levels of antibiotics.

Whether or not this is the drug that caused Jody to stop breathing, we are thankful the desensitization seems to be going well.  I am praying that Jody get’s a good nights sleep (despite all the interruptions), and on the contrary, that his nurse stays alert to all the frequent medication adjustments required of this process.

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