Tag Archives: swallowing study

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.

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One Month Lungiversary

13 Oct

I think a new, updated blog post is in order, how about you?  Jody was transferred out of the ICU Thursday night (Oct. 9th) as we anticipated.  He is back on the cardiovascular progressive care unit, where he was before, and it feels like coming home.  How we missed this place and the nurses, during his week in the ICU.

From a breathing stand-point Jody continues to improve.  Since his transfer he has been off oxygen at rest and his O2 sats have improved, ranging 95-98%.  His shortness of breath with activity is much improved as well.  He is able to walk to the bathroom now without much difficulty.  Last week, even just moving in bed or sitting on the side of the bed elicited shortness of breath like I’ve never seen.  One time in the ICU I saw his O2 sat drop as low as 55% (with good waveform for my fellow nurses), and they consistently dropped into the 60’s with activity.  Yesterday, while walking in the hallway, he still looked and felt short of breath but nothing like the week before.  His oxygen saturation only dropped into the 80’s.  It seems the change in antibiotics are doing the trick to knock this bug out of him, and we’re so glad.  Even his chest x-ray is showing signs of this improvement.

While breathing is much improved, this infection certainly took its toll on Jody.  I am amazed at how much strength can be lost, even for a ‘healthy’ young man, after just one week of inactivity.  It seems Jody has lost a lot of muscle tone and conditioning.  Walking is harder than it’s ever been.  On Saturday he walked about 150 feet and could go no further.  On Sunday he walked one lap around the nursing unit (400 feet), taking three breaks to complete it.  He looks quite wobbly on his feet.  He will need to work with physical therapy to gain back that which was lost.

As you know, Jody has been NPO (nothing by mouth) since Thursday, October 2nd.  Actually, he has only eaten six days of the four weeks he has been here.  He has been getting nourishment through his feeding tube for some of this time, but the effectiveness of it is unknown.  Literally, this feeding is going right through him, even waking him up six or more times a night to use the bathroom.  The doctors adjusted his enzymes to help his body better absorb the nutrients, and eventually switched him to a different formula, which did help a little.

On Saturday Jody started to complain of feeling bloated.  They hooked his feeding tube up to suction and it appeared the tube feeding was being suctioned out of his stomach.  If you remember from a previous post, Jody has two parts to his feeding tube.  The meds, and only meds, go into his stomach, and the feeding goes below his stomach into his small intestine.  There should be no feeding in his stomach because the doctors don’t want it refluxing up into his lungs.  This is why it was odd that when hooked up to suction, tube feeding appeared to be coming from his stomach.  The NP ordered an abdominal x-ray and sure enough, the “J” portion of his feeding tube, which should be in his jejunum, or small intestine, was instead in his stomach.  Tube feedings were stopped all together and Jody will need to have this repaired under endoscopy tomorrow.  Last night they restarted him on IV nutrition (which is said to be less effective, but something nonetheless).  With everything going on in the last four weeks, and only six days of real food, Jody has lost about 20 lbs.  This morning he weighed in at 113 lbs!

CourageThis was a difficult weekend for Jody.  He felt exhausted, tired of all of this, and just plain down in the dumps.  At one point he looked at himself in the mirror, seeing the effects of his 20 pound weight loss (which he didn’t have to lose in the first place), and had a break-down.  He missed our girls, he wanted to eat, he wanted to feel better and strong again, and he wanted to be home.  Truly I can’t imagine what it’s like to be in his shoes.  I see the weight loss, I see how de-conditioned he is, I want him to be home again too, but I kept that to myself and listened and encouraged him.  Now that his breathing is improved I believe those other things will follow suit.  He’s breathing well (for the most part), something he hasn’t done for over a year, so what’s it matter if he’s skin and bones for a short period of time?  Pretty soon he’ll start putting weight on, exercising, and he’ll have his strength back.  “Look out Arnold (Schwarzenegger),” he says!

I am so happy to tell you that Jody’s hallucinations, constant crazy talk in his sleep, and tremors are gone!  His vision is also much improved!  It has been one week since the doctors took him off the Voriconazole, and they told us it could take 5-6 days for it to leave his system and the symptoms to go away.  He was doing and saying some crazy things so it’s wonderful to have him in his right mind again.  I hated talking to him like he was a child, and him thinking I was making things up.  I’m so glad to have Jody be Jody again.  I believe he is now getting better rest since his mind is relaxed (and the fact that he’s not running to the bathroom all night anymore either).

DSC_01367AYesterday afternoon our girls came for a visit.  One of the NP’s in the ICU actually suggested it as a way to boost Jody’s spirits.  It had been four weeks since they saw each other.  Jody choked up when they first walked in, watched them a little and then went to sleep.  He mostly slept through the visit, but it was good for them to see him and know where he is at and that he is okay.  Naturally, we took a family picture before we said our goodbyes.

This morning Jody woke up looking better than he has in a while.  We had been looking forward to this day as the day he would undergo his fourth swallowing test and possibly be allowed to eat again.  He left for the test this morning around 10 am.  Since aspiration might have played a role in what caused Jody’s lung infection, they tested him more extensively DSC_0211Bthis time.  Thank goodness he passed!!!  I knew it would not be good for him (in more ways than one) if he failed, but thankfully he didn’t.  Dr. Shah is allowing him a regular diet but he will need honey-thickened liquids (liquids made to the consistency of honey).  Like the muscles throughout his body, his swallowing muscles are also weakened.  After a few days of eating again this should improve.  He will most likely need one more swallowing eval before they will let him drink un-thickened liquid.  This will mark Cine (swallowing test) #5!  He’s going to be a pro at these by the time he leaves here.  Those of you who know Jody well know that he’s a big iced tea drinker.  I’m wondering what he’s going to think of drinking iced tea with the consistency of honey?  Perhaps he’ll be so happy to eat that the thickened liquids won’t bother him.

It seems things are looking up.  Please pray that no new damage is done when Jody starts eating again (I’m feeling a little paranoid about this considering all we’ve been through), and that progress and healing continue.  We are so ready for the sweet life that these new lungs can and will bring us.

Happy ONE month ‘lungiversary!’

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Four-Day Update

29 Sep

Over the last four days Jody has continued to make progress in his recovery.  On Wednesday I told you we hoped to get the doctors to reorder Jody’s swallowing test since he was feeling better.  Surprisingly enough, they did, and it was scheduled for Friday afternoon.  That morning the doctors planned to make some big changes, which I’ll describe later, but we asked that they hold off on all of those things until after the swallowing test.  We wanted Jody to be in his best shape for the test, and the providers understood and agreed to hold off on the changes.  It felt like there was a lot riding on this test, but I tried to down play it, and encourage Jody to do the best he could.  He left seemingly calm, relaxed, and ready to go.  Many of you saw my post on our Facebook page and prayed for him during this time; thank you.  An hour or so later I saw Jody being wheeled down the hall toward his room where I was waiting.  When he got closer he gave me a thumbs up sign.  I asked if that meant he had passed and he confirmed that he had.  Everyone rejoiced: us, the three male RN transport nurses, Jody’s nurse for the day, and the people around the room who heard.  It was a neat moment to see the excitement of complete strangers who had nothing invested in Jody’s ability to eat.  Truly our smiles couldn’t have been any bigger.  Jody’s eleven day stretch of no food or drink had come to an end (long before the doctors thought it would).

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He PASSED!

I thought for sure Dr. Shah was going to start Jody on a liquid or soft diet but amazingly enough he bumped him straight to regular.  Apparently Jody really passed the test (in fact they didn’t even test him with all the food samples because he did so well with the harder liquids).  I firmly believed Jody didn’t have a mechanical problem that was preventing him from swallowing properly, and I’m so glad the doctors gave him a third chance.  Now we really can enjoy the meals some of you have offered to bring when Jody comes home.  Now he doesn’t have to worry about holiday food.  Now I can bake my annual pumpkin whoopie pies that he enjoys so much.  Now we can eat together in the hospital and I don’t need to leave his room every time I eat and drink something.  It’s so wonderful!  To help improve his overall nutrition, for a day or two after his test Jody continued to receive nourishment through his feeding tube in addition to what he took in by mouth.  One thought to his excessive chest tube draining is malnutrition, so by improving his protein the hope is that the tube drainage will decrease.  After counting all the calories Jody consumed this weekend the team decided that he is taking in enough calories by mouth and they have stopped the tube feeding altogether.  At this point we are unsure if the tube will need to stay in ‘just in case’ or if it will be able to be removed prior to discharge.  In case you’re wondering what the first thing Jody asked for when told he could finally eat, it was strawberry yogurt.  Apparently it never tasted so “strawberry.”

Another advantage to Jody being able to swallow is that he can take pills as well.  This means that some of his IV medications have been switched over to PO (by mouth).  His IV pole is looking much more empty now, but he’s still not free of it.

Since Jody successfully passed his swallowing test, the doctors were quick to make the changes I mentioned in the beginning of this post.  They stopped his IV blood pressure medication, which they had been slowly weaning down, and they turned off his numbing epidural, transitioning him to oral narcotics instead.  We were very skeptical and even a little fearful about the epidural being turned off.  Each day there has been an ongoing debate between the surgeon who wanted it off, and anesthesia, who said it was necessary for pain control.  It already remained in longer than normal, but that was because his chest tubes remained in longer than normal.  I was so afraid of seeing Jody in the intense pain I witnessed before when they stopped the epidural, so much so that I was tearful as the NP (nurse practitioner) discussed this change with us.  She reassured us that there was a right and a wrong way to make this change (obviously it was done the wrong way the last time), and that they weren’t going to let him go through what he went through before.  We came up with a plan for medications and frequency to relieve Jody’s pain, and I’m happy to report it actually worked!  This is a huge relief.  An added bonus is that with the epidural turned off Jody’s blood pressure stayed in the normal range and has been fine ever since.

Late Friday afternoon an ophthalmologist came to Jody’s room to evaluate the blurred vision and spots he has been having since surgery.  She could tell that he was straining to read her charts but an evaluation of the back of his eyes revealed that everything is intact and healthy.  The most likely culprit of his vision problem is one of the necessary medications he is on to protect his new lungs.  The doctors are closely monitoring his blood levels of these medications to make sure he is not getting too much, which could make his eye problem worse.  Jody really doesn’t complain about this issue, but I know it’s frustrating to not be able to read, text, etc.  We really hope this is a short-term issue that will result in full restoration of Jody’s vision.

DSC_0120BSaturday brought another welcomed change, they removed Jody’s right chest tube.  This tube was inserted about 16″ inside of him (the four tubes he had removed prior were only in about 8″).  Jody reported that instantly that side felt so much better, he no longer had the painful, rubbing feeling.  Unfortunately his left tube was the more painful of the two but that tube is draining too much fluid to be removed.  When that tubes is ready to come out we’ll all do the happy dance for sure.

Jody is still tied down by lines and tubes, but far less than before.  This makes moving around much easier.  It used to take 10-15 minutes just to gather up all of his equipment only for him to walk four feet to the bathroom.  As you can imagine, it’s great to be a little more free to move around.  Speaking of moving, Jody’s doing awesome with his walking!  This weekend he reached a new personal best and did 10 laps around the nursing unit which is the equivalent of one mile, without any breaks.  He’s been doing that two or three times a day.  He’s known around here as speed walker, and the older patients joke about how he laps them.  Two weeks ago Jody could not have done this at all, even with the help of 6L of oxygen.  One week ago he was only able to walk about 250 feet.  Today he walked three miles.  We marvel at the coolness of this!  Praise the Lord for his new, healthy lungs!

Saturday night I went home for the first time so that I could spend the day with our girls on Sunday.  As hard as it was to leave, I felt reassured to know that Jody is much more stable now and being well cared for by the JH team of physicians, nurses, etc.  It was nice to spend some time with our girls, hear how their weeks had been and update them on their Daddy.  Unfortunately it seems both girls have colds right now so I didn’t get much of a break from the masks I’ve been wearing for the past two weeks.  Hopefully these will be short lasting so that they won’t keep the girls apart from their Daddy when the time comes.

Things are moving in the right direction.  It’s a relief to know that the worst part of this is behind us (I hope).  We are continuing to meet with the transplant coordinator for education, in fact, the other day we had a marathon three and a half hour session.  There has been no talk of discharge, probably because of that left chest tube, but we know he’s getting closer.  Thank you for your ongoing support.

 

* Thank you also to those who read and shared the last guest blog post about our upcoming auction.  Don’t forget to RSVP for your chance to win an Olive Garden gift card.

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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.

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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.

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Bump #1

20 Sep

Yesterday was a hard day.  Sleep the night before was difficult for Jody, then the morning brought some outside distractions and it just went downhill from there.  It seemed there was never a break from the constant flow of people in and out of the room.  Pulmonary doctors, pain doctors, infectious disease doctors, nurse practitioners, nurses, nurses aides, respiratory therapy, physical therapy, social work, transplant coordinator, housekeeping, and more.  Many of the people even came for multiple visits, and sometimes they were here all at once, fighting for Jody’s attention.  After so many hospitalizations through the years, we’ve become pretty accustomed to this, but yesterday seemed excessive.  I could tell early on that Jody was exhausted and just needed a break.  He felt completely wiped out, attributing it to the fact that he had not had anything to eat or drink since Sunday (five days prior).  He was looking forward to his repeat swallowing study and the food which would (hopefully) come after.

They took Jody down for his repeat swallowing study in the afternoon.  I wish you could see how he needs to be transported because of all the equipment attached to him that must to go along.  I felt certain that he would come back able to eat, even if it were only thick substances, like applesauce.  I was wrong.  Apparently when Jody got there, they moved him and all this tubes and equipment from his bed to a chair for him to sit for the test.  After the first attempt swallowing the liquid given to him, the speech pathologist, loudly, and almost rudely, declared, “No,” indicating it had been an instant failure.  She then said that he needed to stand for this test.  Because of the way he was feeling, it was difficult for him to do that.  He soon became light-headed and had to be laid down on the table.  After being told so unsympathetically that he had failed, and feeling such pain and exhaustion for so long, defeat took over and he had a breakdown.  I wasn’t there but was told he kept asking for me (how I wish I could have been there for him).  He came back to the room even more exhausted if that was even possible.  Shortly after that he needed to use the restroom and in there all but passed out.  When he stood up his eyes glazed over and he wasn’t responding to me.  I threw him back on the toilet, pants on, and hit the emergency bell, to which the entire floor staff responded immediately.  Back in bed, he was told he wasn’t allowed to get up anymore.  I should also mention that they have been weaning him off of the medication he was on to keep his blood pressure up.  I think the activity of the day, combined with the decreasing blood pressure medicine, and Jody’s sheer exhaustion just got the best of him.  He really needed a break from all the activity and just to be left alone so he could rest.  It’s super important for him to walk and do breathing exercises to expand his new lungs but he just couldn’t on this day.

By now you should know that Jody is a man of faith and without meaning to sound too crazy, and without going into detail it was clear that in addition to his physical body, Jody’s spirit was being attacked yesterday as well.   It was very real.  We proclaimed truth over him and cited verses from the Bible of deliverance and protection.  We know people were praying and God heard our prayers and brought Jody peace.  Please remember to pray not just for Jody’s physical body but for his spirit was well.

Finally, after about 30-45 minutes of rest yesterday afternoon Jody was told the difficult news, he was going to need to have a feeding tube surgically inserted for long-term nutrition.  You probably remember me talking about how Jody’s vagus nerve was cut, purposefully, for the transplant.  This means that Jody no longer feels the need to cough and wouldn’t know if he aspirated food or drink into his new lungs.  Think about a time when you drank something and it “Went down the wrong pipe,” as we say, and you began to cough.  Jody would not know if this happened and food or drink in his lungs could lead to an infection.  His swallowing muscles are weak and need time and therapy to strengthen them.  Until then, he will need to use a feeding tube.  This could mean no food or drink for months!!!  We’re pretty devastated about this, but understand that in the scheme of life, this is nothing but a small bump in the road.  I know that friends are planning to set up a meal schedule for us after discharge and we were (are) really looking forward to this.  This is going to be so very helpful for us, me in particular, but now I wonder the impact it will have on Jody.  It’s one thing for him to walk away and not see us eating, but what about the smells of deliciousness that will fill our home?  Will the cups of water our girls carry around bother him?  He is already thinking about the implications of this on the upcoming holiday season.  We hope that if Jody gives it his all through speech therapy, and works hard at exercises to strengthen those muscles he’ll be back to eating in a matter of weeks instead of months.  When that happens the feeding tube will be able to be removed, leaving just one small scar as a reminder of its existence.  Because Jody won’t be getting the feeding tube until Monday, they started him on PPN (Peripheral Parenteral Nutrition) in the meantime.  This is basically all the nutrition he needs mixed together in one bag and administered intravenously.  While he doesn’t get the taste of a pizza, tacos, or an Italian sub like he might like, Jody’s now getting the nutrition his body has been craving over the last five days.  I hope this will help his strength to return so he can get back on the road to recovery.

Many of you probably saw the post I made last night on our Jody Needs Lungs Facebook page asking for prayers for a restful night of sleep for Jody.  I can’t even begin to describe to you how completely and totally exhausted he was physically, emotionally, and spiritually.  Thank you to each and every one of you who took that post seriously and sent petitions to God that he would rest well.  He did!  We both did!  And he’s been sleeping a lot this morning too since it’s a weekend and the interruptions are minimal.  At some point he really does need to get moving again, but he’s still dealing with lower blood pressure and dizziness, which are hindering that.  Pray that this improves as well.  He also still has the two painful chest tubes which are draining too much fluid to be removed yet.

Since Jody is still having issues with his vision he hasn’t been able to read all the wonderful comments you left for him on my blog.  I was hoping to let him read them by himself when he’s ready to because I know they will evoke lots of emotion.  I think he needs some encouragement so I will probably start sitting beside him and reading through them aloud.  Since yesterday was so hard for him, and I think he wanted to give up, I ask that you would keep leaving comments that will uplift, encourage, and push him through this.  He truly is my hero, and even though it’s not the life I would have dreamt for us, it is an honor to walk this journey with him.

 

 

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