Four-Day Update

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).

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.

Saturday 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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Tags: lung transplant, swallowing study