Tag Archives: cystic fibrosis

Years Restored

22 Nov

Jody is doing well.  Really well.  On November 15th he reached the two month mark, and I have to say, his new lungs are downright awesome!  Each week at clinic his lung function continues to climb.  This past week he was at 81.5%!  I can hardly wrap my brain around this considering a few short months ago he was down to 22%.  Can you imagine what that must feel like?  Recently I looked at my records of Jody’s PFT’s from when we started dating 10 years ago (yes, admittingly I do have 10 years of records in my file cabinet).  In 2004 his lung function was hanging around 75%.  Through the next ten years he experienced a slow and steady decline until his lungs nearly gave up here in 2014.  One night in surgery erased 10 years of damage.  It’s crazy!

Pulmonary rehab is going well and Jody is definitely becoming more active.  In fact, this past week in clinic he was reminded not to overdo it because he has a very thin wire holding his chest together right now.  Jody has a transverse sternotomy incision which means they cut his breastbone in half horizontally instead of up and down.  This provides greater access for a lung transplant surgeon than the traditional (vertical) sternotomy.  I searched online to find a photo of this to give you a visual and this is the best one I could find (sorry it’s a little blurry).  On x-ray you can see the bow tie-like wires holding Jody’s sternum together until it heals.  Until that time he continues to have lifting and stretching restrictions.

Speaking of restrictions… two weeks ago his transplant coordinator gave us the impression that he could start driving when he felt up to it, and recently he did.  After two months of me, and only me, at the wheel it was great to have him back at it… he could drive himself to rehab.  At clinic this week he was given a lecture about having started driving and told that he wouldn’t be cleared to drive until six months out of surgery.  The coordinator (who seems to call the shots) did correct the doctor and say that it wouldn’t be that long.  It was frustrating to be given this gentle scolding when just two weeks ago Jody was told that he would know when he felt ready to get behind the wheel.  Perhaps they should have clarified that just because he felt ready didn’t mean he was ready.  So now we’re back to me and only me behind the wheel.  This is complicated because I am back to work, Jody has rehab three days a week and our youngest daughter needs to get to and from preschool three days a week.  Jody’s clearance to drive couldn’t come soon enough.

One thing Jody’s new lungs allowed us to do recently was to celebrate our youngest daughter’s fourth birthday.  We didn’t do anything fancy, just the four of us here at home, DSC_0308Ain fact, I didn’t even make a cake, I bought one (gasp).  Most of you know that one of my favorite things to do is make/decorate fun birthday cakes for our girls but this birthday I decided I didn’t need the added stress.  Piper, forgive me, I promise I’ll make it up to you next year.  The cake I asked the bakers to make turned out cute and she probably didn’t even care that it wasn’t made by me.  Do you remember this post, ‘Thank you, transplant, for waiting two more days?‘  I guess I could have titled this one, ‘Thank you, transplant, for this day.’  I’m so glad our daughter didn’t have to celebrate her birthday without us.  The hope of this transplant is that Jody will thrive, beating the statistics of lung transplants just as he beat the odds stacked against him so many years ago when he was diagnosed with Cystic Fibrosis.  Hopefully he will be around to celebrate many more birthdays.

One final note, our family received some sad news this week that Jody’s Mom, Sharon, was diagnosed with colon cancer.  She has an appointment with a surgeon in two weeks and until then we are left with very little information on the staging of her cancer and the treatment plan.  We know she will have surgery on December 10th and we appreciate your prayers for that.  Thankfully I am off work that day so I can be there for her surgery.  Pray that God would fill her with hope and minimize the negative thoughts that come with every cancer diagnosis.

Thanks for continuing to follow Jody’s Journey.

‘For I will restore you to health and heal your wounds,’ declares the Lord…

Jeremiah 30:17

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Updates from Home

26 Oct

Jody has been home from the hospital for five days now and we are settling into a new routine.  I have three weeks off work and while I’m thankful for that, it doesn’t seem like nearly enough.  I remember the transplant coordinator at the hospital telling me to be sure I was rested and ready for discharge because it would be “all you (me) at home” taking care of Jody.  I am surprised at how much time post-transplant caregiving takes (that and being Mommy).  Twice a day Jody has a number of self-monitoring tasks he needs to do and record, such as weight, vital signs, lung function testing, etc.  DSC_0346AHe has an extensive medication regimen that begins at 8am and concludes at 10pm (see photo on right of all his oral medications).  He also has a number of intravenous (IV) and inhaled medications.  It is so weird to me that his entire medication list is new (as in, he no longer needs most of the CF meds he’s been on for as long as I’ve known him). It feels like everything I’ve learned in the past 10 years about Cystic Fibrosis is thrown out the window and now I’m learning an entire new beast called ‘lung transplant.’

At discharge we sat down with a pharmacist and Jody’s transplant coordinator to review his meds and fill his first pill box.  We were given an eight page chart full of medications to guide us with what to take and when to take it.  This first week I gave Jody a ‘free pass’ and I took responsibility for giving him all of his meds at the appropriate time.  Next week we will do it together and the third week he will do it by himself while I watch.

I learned a few things this past week, one being that the pill box provided by the hospital was not working (at least for me).  There were not enough slots in a day to accommodate the numerous times he needs to take meds.  For instance, all morning meds were lumped into one slot even though they are taken at different times throughout the morning.  After an unsuccessful Google search for a six-slot per day (or more) pill organizer, I decided to get creative and make my own.  I bought two seven-day pill boxes with four slots for each day.  I flipped the boxes on their side to make the seven-days become seven-slots (per day).  DSC_0376Now I can label the specific time Jody needs to take his meds and I even have an extra section for PRN (as needed) drugs or Jody’s digestive enzymes.  I realize that pill boxes are not exciting reading material so please know the only reason I share this with you is because there are a number of pre and post transplant readers of my blog who might find this method helpful for them as well.

In addition to medications, Jody also needs to check his blood sugar four times a day and often requires insulin coverage (he will most likely develop full-blown diabetes as a side effect of some of the medication he is taking for his lungs).  One thing that is odd about this is that because of his Cystic Fibrosis, which still affects his GI system, he doesn’t need to limit his sugar/carbohydrate intake.  As a result, he can eat things most diabetics would need to avoid, although it does cause his blood glucose levels to rise significantly.  It’s hard for me to understand this balance or lack thereof.

On the day of discharge Jody had swallowing study #5 done.  If you remember, the week before he was given permission to eat again, but wasn’t allowed to drink thin liquids.  At this test they did clear him to drink regular liquids but he must tuck his chin down to his chest to swallow.  He is still experiencing laryngeal penetration where the liquids go down into the larynx and are stopped by the vocal cords from entering into the lungs.  He was given a special cup to use for liquids because it only allows him to take in 10 mL of fluid per sip.  I lovingly refer to this cup as his ‘adult sippy cup’ because that’s just how it looks.  This cup prevents him from taking in large volumes which would most likely make their way past the vocal cords at some point.  After everything we’ve been through another aspiration episode is the last thing we need.  Jody also can’t eat foods that are mixed with liquids such as cereal or soup, like vegetable.  Additionally, to prevent aspiration he needs to sleep at a 30 degree or more angle. Propping pillows and not being able to change positions at night has been difficult and uncomfortable for Jody. He is waking up with back pain as a result. We’ve heard mixed talk about the follow-up plan regarding his swallowing issues.  He might need speech therapy to give him exercises to strengthen his swallowing muscles or they might just wait and repeat another swallowing test (yes, #6!) after he’s been eating on his own (which could in itself fix the problem).  For right now Jody is really glad to be able to drink again, even if it is just 10cc’s at a time.

At this time Jody is not allowed to be left alone.  Because he is immunosuppressed, and we are in cold and flu season, we continue to be careful about germs and exposing him to outside people.  It’s hard to know when and how to let up on this.  As far as I am concerned, for the first time in five weeks I am mask-free!  This is both liberating and terrifying at the same time.  I often wonder if I will ever kiss him without fear of killing him by spreading some bug I may not know I have.  I realize everything is quite fresh right now and that I will probably relax about it in due time, but for now the fear of germs and bugs is still very real.

I wish I could say we’ve been living it up here at home and having the time of our lives, but it simply wouldn’t be true.  While the routine is going fine, Jody has not been feeling well.  He has spent much of the week sleeping and is having a lot of intermittent yet intense abdominal pain.  Eating makes the cramping and bloated feeling worse, not eating is causing him to lose weight that he shouldn’t be losing.  It’s hard to encourage him to eat, knowing the pain it will cause him, yet its hard to see the skin hanging off his body knowing it will only get worse if he doesn’t eat.  It wouldn’t surprise me if they start using his feeding tube again for extra nutrition but Jody is strongly against this.

Bowel obstruction could be the cause of all the abdominal pain Jody is experiencing.  Today the doctors called in a prescription for him to do a colonoscopy-type bowel prep that should clean out his system completely.  Tonight he is feeling a little better but he also hasn’t eaten so it’s hard to say if the clean-out worked or if its his empty stomach that has him feeling a little better.  This has been an ongoing issue for Jody and it is very frustrating and overwhelming for him.  He has had moments where he sincerely wondered if all of this (transplant) was even worth it.  I know that deep down he knows it was, and that he will get better, but we (you and I) can’t belittle how hard this major surgery was on him (and anyone else going through it).  It’s so much easier for me to say, “Of course it was worth it!!!” because I’m not the one experiencing it first hand.  For this reason I chose to stay quiet, but it didn’t keep me from shouting those words in my head.  I know that in his heart Jody knows transplant was worth it; he’s got a wife and two little girls to live for and to watch grow into young ladies.

Speaking of little ladies.  On Tuesday our family of four will finally be back together.  Our youngest daughter had a recent live vaccine so she wasn’t allowed to be in the same house as Jody for a two-week period afterwards.  It turned out to be a smooth transition to home only having the oldest with us because she is in school for eight hours a day, and is also a little more independent.  I’m excited to have everyone at home under one roof, but I’m not gonna lie, I’m a little nervous about it too.  Please pray that God would give me an extra dose of patience and that things would go smoothly.

We will be heading back to Hopkins for transplant clinic on Wednesday.  This will be a weekly thing for the time being but the visits will gradually be spaced further apart.  Hopefully by this weeks appointment Jody will feel better and won’t need to stay; that possibility is never very far off.  Please continue to pray for Jody’s ongoing recovery and especially for the GI issues he’s been having.  Your words of encouragement do wonders for the soul.  It is so touching to know that people (still) care and so I hope you will take the time to continue uplifting Jody with your words/comments.  Until next time… thank you for reading.

Battle Scars Revealed

24 Sep

Dinner is served!

Things are moving in the right direction!  Jody’s feeding tube was placed on Monday without any complications.  He has a PEG-J tube which means it has two parts:  The “G,” which goes into his stomach (used for medications), and the “J” which goes into his jejunum, or middle portion of the small intestine.  The “J” tube is where the liquid food is going.  Since Jody is post lung transplant they are very cautious and do not want food going into his stomach because of the risk of reflux, and in turn aspiration into his lungs.  As some of you know, Cystic Fibrosis negatively effects Jody’s ability to digest food so he needs to take digestive enzymes with everything he eats in order to absorb the nutrients.  The staff here were having a difficult time getting the enzymes into his feeding tube but after about 24 hours of head scratching they finally have it figured out.  This makes me glad because now Jody can actually take in the nutrients he needs to grow stronger.

Yesterday the speech therapist stopped by the room.  She immediately commented on how much better Jody was looking since his swallowing test this past Friday.  This has been a sore subject for us.  Jody was so messed up on Friday when he took that test, and you probably remember me telling you how he had to be laid down because of feeling faint.  The therapist even mentioned that when she gave him the first cup he just kind of held it there like he didn’t even know what to do with it (I’m telling you, he was out of it).  I had been telling people that I felt like he didn’t have a fair shot at passing the test because of the way he felt but they solely blame it on the transplant and laryngal nerve damage.  The therapist seemed to think Jody had a good chance of passing if the test was repeated, based on how he looked then and now.  It felt great to finally have someone agree with me.  Convincing the doctors to order another test might be another story.  Please pray with us that they would agree to this and more importantly… that Jody would pass!  After imagining months of nutrition through a feeding tube I’m overjoyed at the slight possibility of Jody being able to eat even before leaving the hospital.  However, even if he doesn’t pass a repeat test, then we’ll no longer wonder if he could have, had the circumstances been different, and we’ll embrace the feeding tube wholeheartedly.

Today Jody had his first bronchoscopy post transplant.  This is a procedure that allows the doctors to look inside Jody’s airways and lungs.  They checked the sites of anastomosis (where Jody’s new lungs were attached), cleaned out some of the mucous and junk in there, and sent more cultures to look for viruses, bacteria, and fungus.  This is a routine procedure and Jody will continue to have these performed throughout the upcoming year.  Thankfully everything looked as it should for one week post-op.

Battle Scars Revealed

Jody’s two chest tubes are still in place.  He will be so happy when they are gone because of the pain they cause him.  Unfortunately they are still draining too much fluid.  The doctors would like to see them draining around 100 mL or less before pulling them.  Today Jody’s left tube had stopped draining all together and I firmly believed it was because of a blood clot inside that was blocking it from escaping.  No one believed me.  I told doctor after doctor, nurse after nurse, anyone who I could I told my theory.  The area where I thought the clot was located couldn’t be visualized because of tape but I knew it was there.  I was concerned about the fluid that would fill Jody’s chest, hindering his ability to breathe.  I wanted to pull my hair out because no one was taking me serious, and I felt Jody would be the one to pay for it.  I’m sure they all thought me extremely annoying, but I didn’t care.  Finally I had the NP (nurse practitioner) come to the room for one last attempt to be heard.  Instead she told me it was fine and that she understood that it was a new thing for us, but that they deal with these all the time, and I should trust them (I heard this from Dr. Shah the other day too, when Jody was so messed up and he could hardly even talk).  Just before the NP walked out of the room Jody asked for a tissue to blow his nose.  I’m sure it was God because when he did the clot that I knew was there broke free and instantly the fluid ran freely down the tube.  Before this he had 20 mL of drainage, after the nose blow he had 300 mL.  As of now he is up to 500 mL.  All of this would have been backing up inside him.  I was so afraid they would pull the tube thinking it wasn’t draining and he would end up needing to have it put back in (which is said to be a painful procedure).  I thank God for listening to me when no one else would.  No one ever acknowledged that I was right, and they don’t need to, but I hope that next time they will take me a little more serious when I express concerns to them.

In my last post I talked about Jody’s low blood pressure.  They started to wean the blood pressure medicine but are doing it much, much slower this time.  He is tolerating it well so far, and is able to get out of bed without feeling like he is going to pass out.

DSC_0112A

100% Oxygen Saturation

Jody is walking each day and every day he goes further and further.  Today he walked two and a half laps around the nursing unit without any rest breaks (approx. 1500 feet).  I’m so proud of him!  It is still so amazing to watch him do this without any oxygen.  At one point today when he was in bed I looked at the monitor and it was reading his oxygen saturation at 100%.  That’s 1-0-0!  It can’t get any better than that!  Never in our married life have I seen his oxygen at 100%.  Naturally I had to take a picture.

Now for an update on Jody’s vision, it’s still a problem.  He continues to have blurred vision and spots, and has had this since the day of surgery (we’re not sure exactly when he first noticed it).  It’s not something that he complains about but I see him struggling to read or look at things close-up, and wish it would fix itself.  We pray that this resolves, especially since the doctors don’t seem to want to do anything about it.

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Jody’s owner’s manual

One important aspect to Jody’s recovery and being prepared for discharge is education.  When he was in the ICU and still on the vent the transplant coordinator stopped by and handed me a one-inch, three-ring binder.  Her exact words were, “Here is the owner’s manual to the rest of Jody’s life.”  Since that time we have been meeting the Jody’s assigned coordinator a little bit each day to begin learning life after transplant. Pray that we can absorb all the information being given to us so that we will be prepared come time for discharge.

Despite the fact that I have expressed some of the negative things we have experienced, we are happy with the care Jody is getting and feel very grateful to be here at this hospital.  It’s surreal to think that the waiting and wondering is over and the worst part of this is behind us.  I look forward to the progress that each new day brings, and I know that one of these days that progress will bring us home.

Baby Steps

22 Sep

Today marks one week since Jody was given the gift of life; a new pair of healthy lungs, for which we’ve all been praying.  Truthfully it’s hard to believe one week has come and gone.  It has been an intense week with many highs, most notably Jody’s first breath with his new lungs, but the week had it’s fair share of low points as well.  Lately it felt like we were having more low points than high points, as if Jody’s progress had come to a halt. We continued to rejoice in these new lungs and believed things would get better.  Jody has said a few times over this past week, “I didn’t know it was going to be like this.”  “They don’t tell you all of this beforehand.”  That being said, he has no regret in his decision to have the transplant done because he realizes that what he is experiencing right now is temporary, and will get better.  He knows that down the road, when he’s enjoying life again, watching his girls grow up, and free of his sick and diseased lungs, it will be the reward for his current suffering.

In my last post I talked mostly of the swallowing study and Jody’s need for a feeding tube.  Surgery for this is scheduled for today at 3:30 pm.  Since we are in a hospital its doubtful that this will be the actual time of surgery, but keep him in your prayers around that time.

Since that last post it seems Jody’s biggest issues have been finding the balance between pain management and low blood pressure.  The doctors believe his thoracic epidural is likely the culprit for his low blood pressure.  He was weaned off of the continuous IV medication which was helping this since he was doing so well and his pressures were stable (that was when he was still able to get up and walk).  In the three days since that time Jody hasn’t really been able to get out of bed or walked because every time he tries, his blood pressure drops and he nearly passes out.

The epidural Jody had been using up to that point was not a narcotic.  It was strictly a numbing agent.  He was getting a continuous rate of this medication to keep his chest area numb, and he had a trigger button which could be pushed for additional pain relief.  He was also getting IV Tylenol and on occasion IV Dilaudid to help when his pain level jumped (usually because of coughing or movement).  The night before last, the doctor covering the floor decided to restart the Dopamine (the medication to increase his pressure) and trial turning off Jody’s epidural to see if it would help with his blood pressure which was in the 60’s again.  While I believed he needed this medication to help with is BP, I was completely and totally against the decision to turn off the epidural.  I don’t think Jody quite understood the implications of this decision.  Slowly, but surely, as the numbing agent wore off, the pain increased… and increased… and increased!  It got to the point where Jody was quietly moaning, writhing, entire body tense, tears flowing.  Again, it was awful to watch!  Again, all I could do was hold his hand, and acknowledge how beyond horrible he must have felt, even tortured.  Thankfully the nurse he had was great and could see his obvious distress.  After multiple phone calls, and probably a good 20 minutes of this (which I’m sure felt like a lifetime to Jody) that same doctor finally returned the nurses page and ordered stronger IV pain medication.  Honestly I wanted to wring his neck for the unnecessary pain he had just caused my husband.  After an hour without use of his epidural, it was turned back on.  Prior to this episode Jody hadn’t been pushing his button for extra numbing medication too often.  They doctors kept reminding him that it was programmed so he couldn’t get too much and that he could and should push the button more often. Once the epidural was turned back on we had a lot of catching up to do in the area of pain management.  During that time they said Jody pushed his button something like 132 times, desperate for relief (not to worry, he wasn’t dosed with the medication that many times because the machine knew better).  It took awhile for Jody to get comfortable again, but by about 1:30 am he finally fell asleep and I did the same.

In the morning (yesterday) I woke up to the sound of Jody talking to his nurse.  Instantly I could tell his speech was off, that he was slurring his words.  I recognized it, and figured it was medication induced but he seemed fairly comfortable.  Late morning it was decided by a team of physicians, that they would once again turn off Jody’s epidural (again with the intent of improving his blood pressure), only this time they would give him a Dilaudid PCA instead.  This is a continuous dose of narcotic into his IV and another button to push for extra doses of pain relief when he needed them.  In addition, they also gave him some volume expanders to help with his blood pressure.  As the day progressed it seemed like Jody was getting worse.  His skin was cool and clammy and he was incredibly diaphoretic (sweating buckets).  We were changing his pillow cases constantly.  Just to touch his arm my glove was coated in sweat.  He was pale and felt and looked awful.  Whenever Jody had been given this drug before (at a much lower dose) he always asked the nurses to push it really slowly because if given too fast he felt chest tightness and shortness of breath.  The problem with the PCA was that when he pushed the button it dosed rapidly and Jody felt the effects of that.  He preferred not to push his button because of that, however the pain was too unbearable not to push it.  Finally, late afternoon I had watched him suffer enough and asked his nurse to have the doctor come and evaluate him.  I knew something was not right and I suspected it was the Dilaudid PCA which was causing all of this.  Dr. Shah, the surgeon came to see Jody and while it seemed he didn’t necessarily agree with me, decided to switch him back to the Bupivacaine epidural (numbing medication), and take the narcotic PCA away.  Dr. Shah is a very smart man, and he runs a tight ship and an excellent lung transplant program, but I knew something had to change and that Jody could not stay in his current condition.  Honestly I’m thankful that I spoke up, because once Jody got back on the epidural he was able to take a nap, and when he woke up, he looked so much better.  His speech was clear, he was processing his thoughts and carrying on a normal conversation.  The sweating had mostly subsided, and he looked comfortable.  By 5:00 pm he even stood in place for a minute or two without feeling dizzy.  It was the best he looked in the last three days.  Additionally, his blood pressure was fine.

Since that time I learned that there was apparently a disagreement that morning among the doctors about stopping the epidural in the first place.  When the anesthesiologist came to see us in the evening he said he was waiting all day for the phone call to restart the epidural (He knew Jody would need it).  In young people like Jody whose nerves are fully functioning he said a PCA just isn’t effective for pain with a clam shell incision.  That was quite evident (not to mention all the negative effects of the drug mentioned above).

Jody had a decent night of sleep and looked good when he woke up today.  It strikes me as ironic to think that when he came from the ICU into the Cardiovascular Progressive Care Unit (CVPCU) he was on the Dopamine for his blood pressure and had the epidural and was doing well and making great progress.  He was weaned very fast from the Dopamine and they changed his pain management as I described and things went down hill fast.  He has come full circle and is now back on both the Dopamine and the epidural, just like when he arrived on the unit, and he is finally looking well.  He’s taking baby steps now in his recovery but even though they are small they are moving him forward, and we thank The Lord for that.  I know that they don’t want to keep him on the Dopamine for too long and it’s a scary thought to think of having to go through what we just went through so we ask that you would join us in praying that Jody would be able to hold his blood pressure when they do wean him, especially while on the epidural which he needs for pain relief.

A final positive report, Jody just got out of bed and walked about 250 feet!  Considering he could barely pivot from bed to chair over the last three days this was wonderful to see. I’m hoping this slow progress continues.

Lots of people have been asking about visits.  Because Jody is on large doses of drugs to suppress his immune system, we are limiting the number of visitors in to see him.  This past week he hasn’t really been up for visits period just because of how lousy he has been feeling.  His days are pretty busy and we also want to make sure he is getting the rest he needs.  If this changes, we will let you know.  Feel free to send him emails, texts, and phone calls and he will respond as he is able.  He is encouraged by all your kind words, cheering him on, and helping him through this journey to new life.

Goodbye ICU

17 Sep

Today is post-op day two and Jody is progressing wonderfully.  I am amazed at how much has changed in such a short period of time.  I ended my last post telling you that Jody was going to have a swallowing study done before he would be granted permission to eat or drink.  In the words of the surgeon, he “Failed miserably!”  This comes as no surprise.  During the transplant itself the vagus nerve is cut and this can impact ones ability to swallow.  I’ve read that it’s quite common for people to fail their first swallowing study.  Dr. Shah wants to repeat the test on Friday but until then, no food or drink.  Jody is dreaming of an Italian sub and many of his favorite foods.  On the plus side, they are allowing him ice chips and I don’t think they have ever tasted so good.

Immediately after Jody was extubated and able to talk (more like utter a few words here and there, since he wasn’t up for much talking), we noticed his voice was very hoarse and quiet.   This could be the result of damage from the breathing tube or from the vagus nerve being cut as previously mentioned.  The doctors have been keeping a close eye on this and said they can do injections to help his voice if it doesn’t improve.  But guess what… it did!  It’s still not perfect, but it’s much better.

Yesterday morning Jody had four of his six chest tubes removed.  In case you’re wondering, chest tubes are tubes that are inserted through the skin and into the lining of the lungs to allow drainage of fluid and air.  It was great to see him lose those four tubes, but the two remaining are causing tremendous pain.  I’m going to estimate that the tubes removed were a 1/2″ in diameter and each one was inserted about 8″ inside his body.  You can imagine how having 48″ of plastic tubing inside you, moving and rubbing might be painful.  Pain management is working with Jody to ensure he is as comfortable as possible.  Even though only two tubes remain, he is moving and walking now so when the tubes inside him move, it causes intense pain and his entire body begins to shake.  It also hurts to take deep breaths which is important for him to do.  Jody looks forward to them being removed once the amount of drainage coming from them decreases.

Look at him go! (Progressive Care Unit)

Did you read that he is moving and walking?!  That’s another great improvement.  Yesterday Jody took his first walk.  It was quite the scene with about three staff members: One supporting him, one pushing his machines & pumps and another following him with a rolling chair in case he needed to sit down.  Jody walked 250 feet, taking two breaks in between.  Today he’s been up and down even more and walked about 450 feet, taking only one break.  The physical therapist says he’s making great progress.  I truly believe if it weren’t for the chest tubes he’d be going even further.  Rehab and physical therapy are going to become a big part of Jody’s recovery.  Each day he will be expected to walk more and to exercise because the harder he works the better it will be for him in the long run.  His recovery will be faster and his lungs will be stronger.  Today as Jody walked he was surrounded by a lot of the equipment he is still hooked up to but one thing was missing… the O2 tank he’s been carrying on his back for the last year.  I feel like all I can say, over and over, is “It’s amazing!”

Get well wishes from the girls (taken in the ICU).

Jody’s blood pressure, which had been really low, hanging in the 60’s is improved as well.  He is still getting IV medications to help with this, but it is staying in the low-normal range.  Yesterday he also had the Swan Ganz catheter removed (this is a catheter that is inserted through his neck and into a pulmonary artery to measure pressures in his heart).  Anyone with this type of catheter is required to be in the ICU so with it gone and with all of the progress he was making he was ready to be transferred out of the cardiovascular surgical intensive care unit.  I couldn’t wait to get him out of there. There are a lot of rules and regulations in the ICU, and I had to leave from 6-8 am & pm (four hours a day) for change of shift.  The nurses were great (for the most part), but I often feel they see little need for family involvement (including a spouse).  It’s frustrating being asked over and over to leave for minor things, especially when I felt Jody would benefit from me being there.  I think me being a nurse (which they didn’t know), and having a need to know what was happening medically with Jody, made this even harder.  So many times I had to bite my tongue and walk away graciously.  Because I couldn’t say it to them, I’ll say it to you; I know without a shadow of a doubt, their perspective would change if it was their loved one lying in that bed.  That issue aside, Jody really did receive wonderful care in the ICU and I’m so grateful.

Room with a view (Progressive Care Unit)

Jody is now in the progressive care unit where he will stay until discharge.  I’m loving it here already.  I don’t have to leave for four hours a day, there is a toilet and shower in the same room (I was going to the NICU to shower, and had to walk a long distance to use a bathroom).  The nurses seem relaxed and the overall environment is less strict.  I can even walk into his room at anytime without the secretary stopping me to “check with the nurse if it is okay.”  An added bonus… he’s got a room with a fantastic view of the Harbor.

As you can see Jody is making so much progress!  I think back to the 30 Day Prayer for Jody prayer challenge and I truly believe God heard our prayers and is honoring our requests.  I know that this doesn’t mean there won’t be bumps in the road, there will, but every smooth turn is reason for praise.  Earlier today when Jody was experiencing a significant amount of chest tube pain I told him I was sorry and that I know one day it will all be worth it.  He responded with, “It already is!”

One small area of concern (to us, not so much to the doctors) is Jody’s vision.  We are not exactly sure when it started, he noticed it yesterday, but he is having a hard time seeing.  He can’t even read a text message on his phone held right in front of his face.  Dr. Shah thought it was blood pressure related, which has improved but his vision has not.  Now he is thinking it is epidural related.  It could also be related to one of the new meds he’s on.  The plan for now is to wait until the epidural is removed and if it doesn’t improve after that they will consult ophthalmology.  Prayers appreciated.

There is one more random piece of information I would like to include even though it doesn’t really ‘fit’ in this post.  I find it interesting and would like to be able to remember it so I need to include it.  This relates to a post I wrote back in March of 2013.  Jody was having major hemoptysis (bleeding from his lungs) and had an extensive pulmonary embolization.  If you ‘followed’ me back then you might remember that in order to stop the bleeding they injected micro beads into his bronchial arteries which acted as clotting agents.  I clearly remember being told that they had to use more clotting agents on Jody than they had ever (in the history of Hopkins) used on a patient.  You can read more about that by clicking here.  Anyway, fast forward to the present.  Dr. Shah told us that when he made the cuts to remove Jody’s old lungs the clotting agents came spilling out.  He made it sound as if they were flowing everywhere and all over the place (probably not literally, but how he made it sound).  When I told him about how much of the beads they had to use to stop the bleeding, he said he was not at all surprised to hear that based on what he saw.  For some reason I found this tidbit oddly fascinating to know.

Today is September 17th, 2014.  On September 17th, 2013, one year ago to the day, we were told the hard truth… that Jody needed a lung transplant.  We weren’t prepared for those words, and it took some time accepting that fact.  Today we sit here, new lungs installed, and we rejoice in the miracle of it.  This past year has been rough, but the doctors were right, Jody needed lungs.  And now he’s got them!

 

*** It’s probably not customary to send flowers to a man in the hospital, but just to be on the safe side, if you were thinking of doing so, don’t!  Jody is not allowed to be around them at this time.***

Jody Got Lungs!

15 Sep

It is with a heart full of awe and gratitude that I announce:

Jody got lungs

Third time was the charm!  Jody is out of the OR and now in the cardiovascular surgical intensive care unit (CVSICU), where he arrived at roughly 0345 this morning.  Surgery was a success, but he is far from ‘out of the woods.’  He is currently sedated and a ventilator is doing all the work of breathing for him while his new lungs rest.  There is hardly a square inch on his body that is not hooked up to a line, tube, or machine.  They are, at this very moment, placing a thoracic epidural which will help to keep his pain under control and in turn improve his breathing (once he is doing it on his own).  I am assured by the nursing team that Jody is right on target with where he needs to be in his recovery process.  There is a long road ahead, especially for Jody.  We covet your prayers.

I realize that I have not given you much detail; it has been a sleepless night and a busy morning.  I don’t feel that I have the time (or energy) yet to write a proper post, but wanted to get something brief out to you.  I do have one favor to ask.  I would LOVE if you would leave comments here on the blog (instead of, or in addition to, Facebook).  Blog comments can be printed out and cherished forever as we remember this journey in the years to come.  I think it would be awesome for you to use this time to write something specifically to Jody so that when he wakes up he will be overwhelmed by the care and kindness of the people around him, both known and unknown.  Imagine waking up to lots of lovin’!  At his point, you know more than he does about what’s happening.  Encourage him and show him your support.  When I look at him now I am saddened that he has to go through all of this, but overwhelmed by the strength and fight he has in him.  Let him know how he inspires you!  Ready. Set. Go…

 

Thank you, Transplant, for waiting two more days

25 Aug

Five months ago, to the day, Jody was officially listed for his new lungs.  When that happened, there were two things I feared transplant would interfere with: Our oldest daughter’s birthday, and her first day of Kindergarten.  Obviously there were other things I preferred not to miss, but those were the biggest.  I naively assumed he would have been transplanted by now, so as the time drew closer I felt nervous that my fear might actually become reality.  Today I’m happy to report that it didn’t!  Thank you, transplant, for waiting at least two more days.

Tabitha's 6th Birthday

Tabitha’s 6th Birthday

Since I normally blog about sickness, and heavy-to-read topics (and there will be a little of that in this post too), I thought I’d change it up a bit and add some fun and lightness into this post.  Since February, when we took our girls to see Disney’s Frozen movie, Tabitha, our oldest, has been obsessed with the movie.  She’s been talking about her “Frozen” birthday party for months.  Because there are so many unknowns in our lives right now, and despite the fact that she has had a birthday party each year, we decided to forgo the party this year.  Tabitha had a hard time accepting and understanding this so we promised her a Frozen Fun Day at home instead, just the four of us.  The hardest thing for me about not having a party was not making her a nice cake, something I have always done and enjoyed.  As Tabby’s birthday grew closer, I

Tabitha's "Frozen" Cake

Tabitha’s “Frozen” Cake

said, “the heck with it,” and decided to go for the cake I had been planning to make, knowing it would never get eaten by our family of four, but not really caring.  Having no training in cake decoration, only learn-as-I-go experience, I’m happy with how the cake turned out.  More importantly, the birthday girl loved it!  We had a great day celebrating Tabitha’s six years of life, thankfully together as a family, and in the end I don’t think she was too bothered by the fact that she didn’t have party.

6th Birthday, Ice princess, Tabitha.

6th Birthday, Ice princess, Tabitha.

Frozen Fun Day completed (thanks again transplant for waiting), today marked another milestone, Tabitha’s first day of Kindergarten.  She was very nervous about this, especially getting on the bus, but thankfully, it went well.  I didn’t even shed a tear until after the bus pulled away.  Here are a few of my favorite shots from the morning.

1st Day of Kindergarten

1st Day of Kindergarten

I’m so relieved, and thankful, that we got to experience these important days with Tabitha.  I’m also grateful that Jody was out of the hospital and well enough to spend this time with us.  Last week, after four days on IV antibiotics, he seemed to be getting worse and we questioned if he might end up admitted.  He felt achy and extremely fatigued, more so than normal.  He spent most of the week in bed sleeping and joked that he felt like a newborn, basically just eating and sleeping.  We figured he might have picked up a virus and needed to do what his body was telling him to do to fight it off.  We’ve been told that for people with CF, especially end-stage CF, a simple virus can hit them hard and take a while (even six weeks) to go away.  Thankfully after three days of rest, he seems to be feeling better.  I never quite feel like he’s off-the-hook when it comes to bacteria and viruses, but I’m glad to see him up, moving around, and spending time with us again.  I would like to ask for prayers that this continues.  Our youngest daughter woke up this morning with a nose that’s running like a faucet, probably a viral infection that will just take time to go away.  Jody can’t afford to get this.  I can’t afford to get this (I need to be healthy and ready to be at his bedside when he gets his new lungs).  Please pray that Piper doesn’t share her sick germs and that her symptoms disappear as quickly as they came.

Thanks for reading.  I hope you enjoyed the pictures (click them to enlarge) and a slightly different, more fun and easy-to-read post.

 

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