Tag Archives: oxygen

Return to the ICU

4 Oct

The night before last, the one when I posted about Jody’s issues with shortness of breath and oxygen desaturation, was a rough one.  For whatever reason (blog writing, the Late Night Show with Jimmy Fallon, nursing tasks, bathroom visits), we didn’t end up going to bed until around 2 am.  Three hours later we were suddenly awoken by a leaking arterial line, and it went down hill from there (unrelated to the A-Line).  Jody’s shortness of breath was ridiculous.  His O2 sats remained low.  I actually felt bad for his nurse because, like me, I think he wished he could do more, or give him more oxygen at least.  The NP happened to come in for her morning rounds and she could see how hard Jody was working to breathe.  She said she was going to telephone Dr. Shah (Jody’s transplant surgeon who calls all the shots), and within minutes she returned to say they were going to transfer him back into the ICU where he could get high flow oxygen.  It seemed odd to me that for so long they were against giving him oxygen (or much of it), and suddenly now it was okay.  I wondered if the ICU could have been avoided altogether if they had given him more O2 prior to that point.  Either way, I wasn’t all that surprised or upset about the transfer.  As much as I dislike the ICU I liked the fact that he would be more closely monitored, and that he would finally get help with breathing.  Once the decision was made to transfer Jody, an ICU doctor came up to evaluate him and impressively, within a matter of 20 minutes, he was on his way out the door.  I stayed behind to pack up our things since we had pretty much moved in and I knew I wouldn’t be allowed back to see him until after they had him settled.

In the ICU they placed him on 6L of oxygen with an order to titrate it down as low as he could tolerate while keeping his sats 90 and above.  They never did put him on high flow (which again makes me wonder why they couldn’t have given him 6L in the step-down unit).  Yesterday Dr. Shah told his ICU nurse to give him a break.  No walking or unnecessary exertion.  The plan was to grant him an easy day with minimal interruptions so he could take it easy and rest.  In theory this sounded like a good plan.  Unfortunately it did not work out entirely as planned.  It wasn’t his breathing that kept him from resting it was the side effects of his medications.  He experienced hallucinations and near constant tremors throughout his entire body (previously these were only seen at rest, this day it was while awake as well).  It felt so weird to talk to him as if he were a child because of the hallucinations.  Sometimes it seemed that while he appeared to be looking right at me, he was actually looking through me.  It was kind of a lonely feeling to know that my Jody wasn’t really there, and it was frustrating for him because he knew that he wasn’t in his right mind.  It was hard for him to get quality sleep because he was constantly awakened by a jerk or tremor, a hand gesture (trying to touch something that wasn’t there), or a hallucination.  The doctors were well aware of this issue.  On a positive note, Jody’s Tacrolimus level, an immunosuppressant contributing to these symptoms, was much decreased yesterday and today it actually came back on the low side.  While he is not free of the above issues yet, they are much improved when compared to yesterday.  Truth be told, he is on a lot of meds that can cause these symptoms.  The doctors speculate that his Voriconazole (an IV anti-fungal medication) is also the culprit for some of this, and especially for his ongoing vision problem.  The thing is, one must weigh the benefits of these drugs against the side effects.  In this case the benefit, healthy, functioning lungs, far outweigh the cost of hallucinations, tremors, and visual disturbances.  One cannot live with sick lungs, as we know all too well.  While these side effects are annoying, discouraging, and even scary at times, we trust they will not be long-term issues for Jody.

Today Jody’s oxygen requirements have ranged from 2-6L via nasal cannula.  He continues to struggle with extreme shortness of breath with any movement.  Today the plan was to attempt a walk or two with the knowledge that he would need additional O2 support to make that happen.  At lunchtime Jody took his first walk using a Venturi mask which delivered 50% oxygen.  With his nurse, physical therapist, IV pump, cardiac monitor, and myself by his side, and a chair wheeled behind, he walked 235 feet!  He required three breaks during this time to allow his body to rest and his O2 sats to recover (even with the Venturi mask they dropped into the low 80’s).  It’s still mind-boggling to me that just four days ago he was walking one mile at a time with no breaks, and no drop in his O2 saturation.  It feels like we are starting back at square one.  Regardless, I was so proud of him for getting out of bed, pushing past the pain and struggle for air, and walking in spite of it all.  Even better, five hours later he did it again.  This time he walked about 400 feet with no breaks at all, and his O2 sats were a little more stable.  Again I made sure he knew how proud I was of him.

We are still waiting for the official result of his sputum culture which shows gram negative rods.  Because of the length of time it is taking for the results to come back the doctors have an idea of what it will show and have already made a few changes to his IV antibiotic regimen.  His ICU nurse, with years of experience, told me tonight that Jody might have broken his record for the most antibiotics given in a 12 hour shift.  Needless to say, he should be well covered for any and every bacteria that is working against him.

Jody’s ONE ice chip

Jody is still unable to eat or drink.  He is allowed one ice chip every two or three hours.  His mouth is so dry and it feels like a cruel joke to say, “Here is your (one) ice chip.”  As one who guzzles water all day long this is inconceivable to me.  So… as any good wife would do, when it’s time for another ice chip I search the cup for the biggest, fattest chip I can find.

The wait for Jody’s new lungs is over, but now we find ourselves in another period of waiting.  We are waiting for the new lungs to heal.  For two weeks Jody experienced a fraction of what it is like to breathe freely and comfortably, not that those weeks were without their challenges, they weren’t.  Sadly Jody’s now back to struggling for each and every breath he takes, almost more so than with his old CF infused lungs.  And so we wait.  And we pray.  And we thank God for this gift he’s been given because we know it will get better.  But this is hard.  It’s so hard, especially on Jody.  Tonight he seems discouraged.  I remind him of his strength, his fight, and that he can do this!  I remind him that even Jesus grew weary (as commented on our Facebook page).  I remind him that I love him and that I’m so proud of him: his attitude, his drive and his endurance.  Tomorrow is a new day, and will bring renewed fight and determination, of that I am sure.  He will beat this, and he will breathe easily again soon.  This I know.

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The Transplant Story

16 Sep

Before I begin I want to thank you for all the calls, texts, comments, messages, etc.  I wish I could respond to each of them, but it’s just been too busy here in the ICU.  I should also note that I am not allowed to talk on my cell phone in Jody’s room, and that is where I have been spending my time (there is no land line to his room either).  I am so touched by your encouragement and I know Jody will be too.  I can’t wait for him to read all the comments you left on my blog, thank you for doing so.  After a ‘decent’ night of sleep, I’m ready to put Jody’s transplant story on paper (technically a computer screen).  To make things easier on myself and to help Jody & I remember the details, I’ll put the events in a timeline.

Sunday, Sept. 14th, 2014

3:35 pm: Received phone call from JH transplant coordinator of lungs for Jody.  Told to leave ASAP.

4:20 pm:  Left our house (needed to wait for someone to come take our daughters).

5:42 pm:  Arrived at JHH after an uneventful drive.

6:15 pm:  Taken to the ICU where he would remain for his pre-op period.  We were told that surgery was scheduled for 9 pm.  Here they started IV’s, drew labs, did a few other tests, and had him do his pre-op scrub down.

8:30 pm:  Anesthesia consents were signed.

9:00 pm:  Surgery consents were signed.

9:35 pm:  Left the ICU for the OR

11:24 pm:  Surgery began.  The time between when he left for the OR and when surgery actually started was the time it took for anesthesia to place all the lines/tubes that he would need for this procedure (breathing tube, central lines, A-line, femoral line, etc.).

Monday, Sept. 15th, 2014

12:16 am:  Jody’s new lungs arrived.

12:39 am:  Left lung was being put in.

2:25 am:  Both lungs were officially in (JODY GOT LUNGS)!!!

3:00 am:  Dr. Shah, the transplant surgeon came out to talk to me and tell me how everything went, which was well.

3:35 am:  Transferred out of the OR and into the ICU (exactly 12 hrs after receiving the call from home).

5:30 am: I returned to the ICU to see Jody for the first time post-operatively.

When we got the call at home I wasn’t sure what to think, especially after the two previous calls which ended in dry runs (check out those posts if you haven’t read them, by clicking here & here).  I honestly wasn’t as willing to believe that this was the real deal as I had been during the previous run.  Jody, on the other hand, somehow knew this would be the one, and he was much more emotional about it, compared to the previous dry runs.

Once the ball got rolling, the timeline of events seemed to progress rather quickly.  You might think I’m crazy for this, but I purposefully chose to be by myself for the procedure.  I didn’t know how I would react or respond and I didn’t want to feel like I needed to be strong for others or that I was entertaining people while I waited.  I appreciated our family’s understanding of this.  Since transplant happened in the middle of the night on a Sunday night, I had the entire waiting room to myself.  The lights were dimmed, it was quiet and peaceful, it was just me, and it was great!  Truthfully, I felt very calm.  I knew that we were being covered in prayer by the few people who knew Jody had been called.  I knew that Jody was in good hands with Dr. Shah and even better in the hands of The Great Physician Himself.

For me, the most emotional time up to this point was after Jody left for the OR.  I walked to the parking garage to drop off and pick up some things.  While there I heard the incoming sound of the JH chopper.  Instantly I knew it was carrying Jody’s lungs and I needed to see it!  I went running, bags and things falling all over the garage, which thankfully wasn’t busy.  As I watched the chopper land, and heard the loud roar of the engine & propellers, I became overcome with emotion.  Suddenly I felt such intense grief for a family who, while we rejoice, are gathering to mourn the suddenly loss of a loved one (brings tears to my eyes even as I type this).  How do you thank someone for a gift such as this?  My feelings of grief were followed by joy, hope, fear, and nervousness, all rolled into one.  I had my moment of tears, but as the chopper lifted back up minutes later, I wiped my tears, and carried on.  In case you paid special attention to the timeline of events, you may have noticed that it turns out I was wrong about that chopper carrying Jody’s lungs.  They didn’t arrive until 12:16 am!  Either way, I believe God used that moment to help me feel a small fraction of what the donor family was feeling.  Please, please, as you pray for Jody and his recovery, remember this giving and grieving family in your prayers too.  It’s unbearable for me to think of what would have happened to Jody if new lungs never came and it hurts to know that another family is experiencing this pain in their hearts.

The thing I was most nervous about following transplant was walking back to see Jody for the first time.  I felt pretty prepared for all the equipment, but how do you prepare yourself to see a loved one lying still and helpless and on a breathing machine?  I wasn’t prepared for what I saw.  The gobs of lines, tubes, and machines had no effect on me.  It was his face.  I saw him from the door as I prepped to go in (donning gown, gloves and mask), and I felt like I’d just had the wind knocked out of me.  He looked, putting it bluntly, dead.  The color of his skin, the stillness of his body.  My first thought was, “He looks like he’s lying in a coffin!”  It took courage to bring myself to walk into his room.  As I stood there, I couldn’t get past that thought, and I began to feel queasy so I grabbed a chair to sit down beside him.  I must have done a good job of hiding my shock at how he looked because it went completely unnoticed by the nurse taking care of him (who was wonderful by the way).  Honestly, it probably took a good hour until I could see past the ‘deadness’ in his face and skin, but thankfully, eventually I could.

At this point in time Jody was completely and totally sedated.  In fact, he still had paralytic agents in his body from surgery so he literally could not move.  For many hours he laid there completely still and unaware of anything going on around him.  Jody has what is termed a ‘clam shell’ incision, one that goes completely across his chest horizontally, instead of vertically as seen in heart surgery.  The clam shell incision is known for being especially painful.  For this reason, late morning yesterday they inserted an epidural catheter, much like women use for labor, only this numbs his upper chest.  Once the catheter was in and Jody was receiving pain mediation to his incision they started to wake him.  In order to start using those new lungs, he needed to be awake.  It was around 11:30 am when they lowered the ventilator settings to allow Jody to do most of the work of breathing, and breathing he did.  It was awesome!  The unpleasant thing for him was being awake, tied down, and having a tube down his throat.  He had been warned pre-operatively of the need to stay calm and not fight because it would only make it worse for him, and make the gagging sensation worse as well.  Knowing and doing are two very different things.  Throughout the day, this became the hardest thing to watch.  He was so uncomfortable with that tube and all we could do was tell him over and over that he needs to relax and stay calm.  I held his hand and rubbed his hair, doing the best I could to calm him down.  It was miserable.  There were times he looked at me like, “You have NO idea what this is like, I can’t do this.”  I could see his frustration and how desperately he wanted that tube out… but his lungs weren’t ready yet.  I truly cannot put into words how awful this part was for me.  Over and over I wanted to weep and say, “I’m so so sorry you have to go through this (again the tears fill as I type).”  I realized that this gift of life comes at a huge price for both the donor and the recipient.  It’s no piece of cake!

From a breathing stand point Jody was doing great, that was never an issue, thankfully.  Initially Dr. Shah told me that they planned to remove the breathing tube today, and I wondered how we were going to make it until then.  Jody’s nurse called me his “Professional Calmer Downer,”  because he was much calmer when he could feel my touch.  But how could I sit at his bedside all night (after already losing 24 hrs of sleep), and how could he endure it?  They began testing Jody to see if he would be able to breathe completely on his own if they pulled the tube earlier than planned, and he passed with flying colors!  At 4:35 pm they extubated him (removed the breathing tube), and it was instant relief for Jody.  Do you want to know the first words he managed to faintly whisper?   Of all the things he could have said, like, “I wanted you to stop telling me to relax,” or of all the things he could have complained about, such as pain, he instead chose three little yet powerful words, “I love you!”   This speaks to his character.

Jody had essentially been breathing on his own on the vent, but with the tube gone, it actually looked like he was breathing on his own.  They put him on 2L of oxygen, not because he needed it but “just to make us (the team) feel better.”  Remember, coming into the hospital he was on 6L of continuous O2 and was still short of breath.  By 5:00 pm (only 25 minutes later) they removed the oxygen all together and he was breathing 100% on his own.  It was amazing!  His pulse ox started in the high 80’s and slowly increased to around 94-95% which is where it’s hanging right now.  Next to the birth of my children, this was the most miraculous thing I’d ever seen!  Someone else’s lungs, in him, breathing, on their own, just as they had done before.  It worked!!!  Jody no longer has scarred and failing lungs in him, but instead, strong, healthy ones!  To see him off oxygen was… can’t even find the right word, only more tears.  He has continued to breathe free of any assistance, and it’s breath-taking for me.

Jody is doing amazingly well, but the journey is far from over.  He has low blood pressure which they are working to improve.  They want to keep his lungs dry so they need to avoid giving him fluids.  Instead he’s on meds to improve his pressure and also got a few blood transfusions since surgery which has helped. One thing that is really bothering Jody is his dry mouth.  He hasn’t been allowed any liquids, including ice chips because of the risk of aspiration into his new lungs.  He will undergo a swallowing study this afternoon which will determine if he will be allowed to eat or drink.  After being given medications which cause dry mouth, and his mouth hanging open throughout surgery and the entire time he had the breathing tube, I can’t imagine how parched he must feel.  Please pray that God would take this feeling away from him and/or that he would pass his swallowing test when they are done.

There is so much more I could share with you but I need to stop.  I’m glad I could finally get this out to you.  Today is a busy day for Jody and I will continue to update you when I can.  Praising God for answered prayers, may He receive all the credit for Jody’s incredible progress!

I'm Breathing!

 

 

 

 

 

 

 

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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.

 

 

 

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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.

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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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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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