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Pneumothorax Explained

10 Oct

I sat in the endoscopy waiting room at Hopkins this past Friday as I have done many times over the last two years.  Jody had just completed the last of his post-transplant surveillance bronchoscopies (this was his two year bronch).  Now that the routine bronch’s are complete, any ordered in the future will be to rule something out or because the doctors are suspecting something.  Dr. Mathai, one of the pulmonary doctors that we’ve gotten to know through the years (not a CF or transplant doctor), had just came out to the waiting room to tell me everything went great, the lungs looked good and that Jody would be in recovery soon.  I’ve heard this speech many times, but don’t get me wrong, it’s always reassuring to know that things still look good.  Dr. Mathai left and I went back to a journal I’d been working on, knowing that I would be called back to the recovery area in about 20 minutes.

About 15-20 minutes later (I’m guessing) a doctor came out to speak with the young women sitting in the chair across from me.  She looked to be about my age.  The doctor told this lady that her husband’s procedure went well and was finished but that she wouldn’t be able to go back to recovery to see him because there was a patient back there who was having problems.  Unfortunately, her husband was in the bay next to the one with the problem.  Apparently this patient was having chest pain and they were asking all family to leave the area.  The doctor didn’t want this patient to worry about what was taking so long so she was simply reassuring her that everything was fine with her loved one.  This woman was not happy, in fact she was mad, “I don’t understand!  I’m family, I should be allowed to go back and see my husband!”  The doctor left and she continued to complain to me about how unfair this was that she couldn’t go back to see her husband because of someone else’s.  All I could do was wonder, could it be my husband?

As soon as I overheard that doctor explain that a male patient was crashing (they wouldn’t ask all family to step out if it was a stable situation), my stomach tightened.  I really don’t know how many bays (rooms) there are in endoscopy, I’m going to guess around 30.  It’s a big unit and they are always full.  The chances of that crashing patient being my husband were so slim and yet I couldn’t shake that nagging feeling.  I immediately began to pray.  I didn’t know what was happening but God did and even if it wasn’t my husband that person could obviously use some prayer.  I waited a few minutes then picked up my phone to text a friend about the conversation I had just overheard, and to pray for Jody, “just in case.”  Before I finished that text my phone rang.  It was a 410 (Baltimore) area code. That number confirmed my fears… Jody was the crashing patient! He was the reason the woman next to me couldn’t go back to see her stable husband.

I answered and Dr. Mathai was on the other line.  He told me that Jody was in a lot of pain and that he had a pneumothorax (collapsed lung).  A team was on it’s way to put in a chest tube to remove the air that was building up, causing his lung to collapse.  He said he was stable (although he seemed very vague and I kept thinking of what the other doctor had said).  He told me Jody would need to be admitted and that he would update me in an hour.  A little over an hour the pulmonary fellow called me to say that Jody was back in recovery with his chest tube and was doing much better, I breathed a sigh of relief.

In recovery after pneumo and chest tube placement

Jody doesn’t remember much of what happened after his bronch since he was just coming out of anesthesia.  He remembers waking up in the recovery unit in excruciating pain and unable to catch his breath.  He remembers hearing Dr. Mathai say, “We need to get him back to the operating room NOW and we need to get a chest x-ray to know what’s going on.”  The next thing he remembers is waking up in recovery with a chest tube in his right side and a bandaged hole in his right upper chest where they unsuccessfully tried to place the first tube.  His pain and breathing was much improved. That being said, it still hurt.  Chest tubes are painful.

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Pneumothorax illustration (via Google, exact source unknown)

You might be wondering how Jody ended up with a collapsed lung from his bronch, after all, this was probably near his 15th one and it never happened before.  Every time we sign the consents for this procedure we are told of all the possible risks, pneumothorax is one of them.  This complication is so rare, occurring in somewhere around 1% of all cases that no one actually thinks it’s going to happen.  I mean really, think of the odds of being in that 1% group.  During a bronchoscopy with biopsy the doctor inserts a scope down into Jody’s lungs, performs a lung “washing” and then takes a tissue sample.  This sample is sent to the lab to check for rejection.  When that tissue sample was taken this time, it must have punctured Jody’s right lung, allowing air to leak from the lung into the space between his lung and chest wall.  The more he breathed, the more air was escaping.  This build-up of air pressure caused his right lung to partially collapse.  My guess is you’ve seen the Hollywood version of this sometime in your life when a patient on a medical show is found gasping for air and someone quickly jams a syringe into their right upper chest to relieve the pressure.  Suddenly the patient is able to breathe again, and with chest tube in place, allowing air to escape, Jody could too.

One of many chest x-ray’s

Over the next day and a half Jody was well medicated and gradually weaned off the oxygen and chest tube.  The first day his tube was hooked up to suction, which uses pressure to remove air and fluid.  A CXR (chest x-ray) the next morning showed his lung was re-inflated so they switched his tube over to water seal. This allowed air and fluid to escape by gravity instead of being pulled out by suction. After four hours of this another CXR was done.  It showed no new accumulation of air and so the chest tube was clamped altogether. This meant noting could drain out.  If Jody had a small, slow leak in his lung, this would certainly show it.  Three hours later, another CXR. Everything looked good, no air leaks.  The fellow came and pulled the tube with Jody lying down in bed.  It was evening by then, but she said we were free to go home and she left.  Jody sat up a minute or two later and was immediately hit with intense pain in his chest.  His breathing was fast and shallow as he struggled for air.  When the call bell didn’t work to bring staff to the room I ran to the desk and soon we had help.  They ordered a stat CXR to make sure he hadn’t developed another pneumo (unlikely but his symptoms were similar and so it needed to be ruled out).  The CXR was negative and this sudden onset of pain and shortness of breath was ruled, pleurisy, a fancy medical term for irritation or inflammation of the tissues that line the lungs and chest cavity, in this case, probably the result of the chest tube being pulled.  Jody was dosed heavy with IV pain medication which knocked him out, a reassuring sight after fear that he was going downhill again.  All that excitement bought us another night at Hotel Hopkins.  Jody only required one dose of pain medication before bed and thankfully by morning his pain was pretty much gone.  We were discharged around lunchtime yesterday.  Over the next few weeks Jody is not supposed to lift anything heavy.  He’s also not allowed to do lung function tests for six weeks (he normally does them twice a day).  The purpose of this is to give his lung time to heal, making sure the small puncture site is securely closed and won’t break open causing another pneumothorax.

We certainly hadn’t anticipated spending our entire weekend in the hospital but I’m thankful to the team at Hopkins that kept Jody safe and to all of you who jumped in and prayed for him.  I also want to give a shout out to my Mother-in-law who sacrificed her birthday to watch our girls so I could be with Jody at the hospital – Thank you.  I’m glad Jody doesn’t have anymore bronch’s scheduled and I think in the future we’ll pack a bag just in case.  Jody took this experience in stride and kept his sense of humor (when well medicated).  “Well,” he jokes, “At least I went out with a bang!”

Sternal Wires

4 Aug

Hello there! How’ve you been? I’ve been quiet on the blog for the past seven months and for the most part, all has been well for Jody us over that period of time. We had one threat of a hospitalization in April but thankfully it was avoided. Probably the most exciting thing that happened to us during this time was selling our home of 11 years, moving into an apartment for two months and finally, buying our new home in April. Our “new” home was built in the early 70’s so we have big dreams about all the changes and upgrades we’d eventually like to make (it’s good this will likely be our “forever” home because it might just take us that long to carry out our plans). Jody’s to-do list seems a mile long and sometimes he feels overwhelmed by it. When I hear him talk about how much he has to do I’m reminded of a time, not so long ago, when he yearned to be able to put his hands-on, fixer-upper, woodworking skills to good use. Instead, during that time he and his new friend Tank (aka his oxygen tank) spent a lot of time getting to know each other, home projects not included. Despite his never-ending project list I know Jody is excited about getting his hands dirty again and what a great job of it he has done! Perhaps I’ll write another post about some of the improvements he’s made to our new home and include some before and after pictures. I mean really, who doesn’t love a good before and after photo?

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Break points in the sternal wires

Jody clearly keeps himself pretty active, thanks be to his recycled lungs. Unfortunately, however, this activity has caused him some recent problems. A couple of weeks ago he started experiencing sharp, jagging pain in his chest area. His transplant team sent him for a chest x-ray which confirmed that his sternal wires (the wires placed during transplant to hold his cracked sternum together) were broken in SIX places!!! We were told this could likely be fixed through laparoscopic surgery with an overnight stay for observation only.

Yesterday we met with Dr. Bush, the cardiothoracic surgeon at Hopkins to discuss the surgery needed to remove the wires. On a side note, Jody’s transplant surgeon, Dr. Shah, moved to Tennessee last year and Dr. Bush is his replacement (from San Francisco). It was great to finally meet him and we were impressed by how personable he was. Since November Dr. Bush has performed 12 lung transplants at Hopkins (and who knows how many heart transplants?). Now back to Jody… In our meeting with the surgeon yesterday we learned that removing Jody’s internal wires would be a little more complicated than originally thought.

It is apparently not uncommon for one to have a (as in one) break in chest wires a few years out of transplant when activity level picks up. What typically happens is that once that wire breaks open it releases the pressure on the wire (which was wrapped tight around the bones to hold them together until fused). After this release in pressure, the wire doesn’t normally break again and can be pulled out in one piece, done as simple outpatient surgery. Dr. Bush seemed at a loss for why Jody’s wires continued to break in so many places since they were no longer under pressure. By that point though it didn’t really matter so much why they broke but rather how to remove them.

Dr. Bush planned to make two incisions along Jody’s original transplant scar line. Using guided fluoroscopy (a live x-ray that shows movement) he would locate the migrating pieces and remove them, along with the intact wire. The location of the small pieces and the degree of scarring between the lungs and chest wall would determine the level of difficulty in removing the pieces. It is expected after lung transplant to have some degree of scarring. Too much scarring would disqualify Jody from ever being able to undergo a second double-lung transplant should he need one. Dr. Bush said this surgery may or may not give us an indication on how much scarring is present. He also noted the likelihood of Jody needing chest tubes after surgery to allow for drainage of air and blood. These were quite painful for him following transplant so we hoped they can be avoided. If chest tubes would be used it would require Jody to spend a few days in the hospital.  This wasn’t exactly what we wanted to hear but we’ve learned to roll with the punches.

Shortly after we got home from our pre-op appointments at Hopkins yesterday, Jody received a call from a doctor stating that his potassium (K+) level drawn earlier in the day was high (6.4) and he needed to go to the ER for IV fluids. The normal range for K+ is 3.5-5.5 and while it might not seem like he was much over the normal range, this is an electrolyte that impacts the rhythm of the heart and therefore needed to be treated. Any dialysis nurse will tell you they have lost patients due to high serum (blood) potassium levels. Jody’s kidney function is decreased but not enough to cause such a spike in his K+. After some discussion it was decided that he would come to Hopkins to be directly admitted instead of going to a local ER. Once at Hopkins they redrew his labs and started an IV while waiting for the labwork to come back. They planned to give him laxatives throughout the night that would help him excrete the potassium through his bowels (so much for a good night’s sleep). If the K+ level would not come down, surgery this morning was going to be cancelled. This was the point when I put a call out via our Jody Needs Lungs Facebook page, asking you to pray. Jody took his first dose of the laxative and 30 seconds later the doctor came in and said his repeat K+ level as 4.9. Normal! What lousy timing, had he come in 30 seconds sooner Jody wouldn’t have needed to take the laxative. Still, we were glad that our prayers had been answered and his level was back to normal. It does make us question the accuracy of the original result. Jody still received IV fluids overnight to help improve his kidney function but at least he no longer needed to be hooked up to the heart monitor nor receive multiple laxatives throughout the night.

This morning went off without a hitch. His potassium level stayed down throughout the night.  A repeat chest x-ray today showed more broken wires but one of the broken pieces migrated to a better, more superficial, area. The surgeon seemed pretty excited about this, noting that it would make the piece much easier to remove.  This would require another lower incision but seriously, after a lifetime of scar-inflicting procedures/surgeries, what was one more? Again the surgeon questioned why his wires migrated so freely but soon they would be gone altogether. Shortly thereafter Jody left for the OR.

 

*Post-Surgical Update*

As I was working on this post while Jody was in surgery Dr. Bush came out much sooner than expected to tell me surgery was done. His exact words were, “This was the easiest wire removal I’ve ever done, it was bizarre!” I don’t think it was bizarre, I think it was God! The wires were all superficial so he didn’t even see the lungs. He also mentioned that Jody must not have much scarring because of the way the wires were able to migrate freely (again, totally God!). No chest tubes. No exploring. No complications. Easy peasy. Dr. Bush even told me he could go home TODAY!!! Once again I felt humbled by God’s grace and the miracles He has performed in Jody’s life.

As it turns out we won’t be heading home today.  The anesthesia used for Jody’s surgery hit him hard and he spent all afternoon fighting nausea, vomiting and light-headedness.  He is still very sleepy but is finally starting to feel a little better. Pain has been minimal. I’m confident we’ll be home tomorrow and am glad to be on the other end of this.  I’m especially relieved that surgery went so much better than anticipated.  We appreciate your prayer support and believe it impacted the outcome of the events of the last two days. Here’s to Jody living pain and wire free!

Just for fun:  On the right is a picture Dr. Bush took for me. He laid the wires out as they were positioned in Jody’s chest (Picture Jody lying on the OR table with his head to the right in this picture and feet to the left). Eight broken pieces! No wonder the poor guy was in so much pain with all those wires floating around.

 

 

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.

CF Exacerbations

6 Jun

Bridge from parking garage to JHH

Good morning!  Many of you probably saw the Facebook post on our Jody Needs Lungs page last night that Jody was admitted to Hopkins yesterday evening.  This was, of course, related to his Cystic Fibrosis, but completely unrelated to transplant.  This is a typical CF exacerbation, like those you have read about many times here on my blog.  It’s hard to know what to say (to keep you interested) that hasn’t already been said, and yet, this is our life.  This is Cystic Fibrosis.  While you might read this and think, “Oh, it’s just another infection,” to us its a lot more than that.  It impacts our living, working, and for Jody, breathing.  Even though a hospitalization always puts a kink in life, I’m so thankful for this “little” exacerbation because I know it could be a lot worse.  It could be pneumonia, or something worse, and he could be very sick; too sick for transplant.  So I’m counting my blessings and enjoying the time I have to spend at his bedside, making memories.

Airway clearance by chest PT

This time Jody’s symptoms primarily included increased shortness of breath, requiring more oxygen use, complaints of frequent headaches, especially through the night or when napping, and feeling more tired.  Again they want to check blood gases (both venous & arterial) to see if his carbon dioxide (CO2) level is too high.  Today he was started on his usual triple IV antibiotics, and he continues with his standard hospital services, such as nebulizer treatments, rehab, and chest physical therapy (PT).  Above is a picture of Jody from his chest PT session this morning with therapist, Lauren, who is pounding on his back and sides.  This is a form of airway clearance which helps to loosen and break-up the mucus from his lungs.  At home Jody wears a mechanical “vest” to shake the mucus loose, helping to clear his airways.  Jody also had lung function tests done this morning and his lung function is now down to 22%, the lowest it’s ever been (which explains the increased shortness of breath).  We hope that after this course of antibiotics that number will improve ever so slightly.

If things progress as planned, we don’t anticipate this being a long hospitalization.  Jody will finish his three weeks of IV antibiotics at home after discharge, as he has done many times in the past.  He also continues to wait for the call for his new lungs, which we pray will come before these “little” exacerbations become more serious, hindering Jody’s ability to get a transplant.

Once again I want to thank all of you who are praying for us and continuing on in the “30 Days of Prayer for Jody” prayer challenge.  Someone recently asked me if we feel prayed for, and we do.  Thank you!  Please keep the prayers coming our way.

 

 

 

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.

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!

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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