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!
This 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).
Yesterday 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 
this 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!’
CF Wife 
I am sure the girls where a huge help to
You and your spirits. Keep going jody! You are making steps. Sometimes, I am sure you feel like it is just a baby step…. But Jody, it is a step toward healing, going home, and recovery! You are amazing and we are so proud of your strength.
And one day….. We will go for that run together!!
So happy to hear about the progress. That is wonderful news. I am glad that the girls were able to visit you and Jody, I hope that was a boost to Jody’s morale. We continue to think about, and pray for your family.
So thankful things are looking up. Praying for a smoother road ahead. I know how frustrating it can be regarding health issues but I also know that Jody is a fighter & with God’s power behind him the victory is already His. It was so sweet to hear his voice on the phone but to see his face in person is going to be even sweeter!! You have all been through so much I am imploring God to give you extra special days ahead. You continue to be in our thoughts & prayers. Our love to all of you.
So happy the swallow test went well and food is back on the agenda! Also so very excited the girls could visit! I am sure this lifted everyone’s spirits!!
Jody, you are amazing and one day at a time and one foot in front of the other for one more step tomorrow then today.
The day you have your run with Sheryl, I want to be there to cheer you on!!
You are loved!!
Way to go Jody!!. Great news to hear of improvement. And seeing the girls, I know had to help. Tiff It is awesome to see you right there by his side, and encouraging him when he needs it most. Hang in there both of you, and this Journey will lead you home. Praying for continued strength and healing. God bless
So happy that things are looking better Jody! It’s a slow process, but know you’re headed in the right direction now!! Glad you had the visit with the girls…the picture said it all!! Stay strong, and prayers always for you and your family…
Your update was full of such wonderful news. You are in my special prayers. Baby steps in the right direction will get your goal accomplished. Keep up the great job Jody .I loved the pictures you shared. God be with you all. Paula
After my transplant I lost over 20lbs in 2 weeks. It was horrible. I had no muscle left to walk so I know what it’s like to wobble in the halls. The j-tube I got after transplant did the same thing, it slipped out of place into my stomach. I’m constantly afraid it will happen with the one I have now because my stomach isn’t working yet. What formula did they put him on? Did they try peptamen 1.5? It supposed to be somewhat predigested with the enzymes already in the formula. I’m glad to hear he is getting better.
It is amazing how much you two have had to deal with in the last month. It must feel like a roller coaster ride with all the ups and downs. I am so glad that Jody got to see the girls. I continue to pray for all of you, and look forward to more good news.
So very glad Jody got to see his girls, (all of them). Jody, it is a very rough long road, but you can do it! Congrats on the swallowing, lets pray that, that will be the ticket to helping you absorb the nutrients you need to build and repair your body. Keep that walking going! I know you will, you are a good patient! My prayers continue, to give you strength and the will to face each day.
love,
Marilyn
So thankful to hear things are looking up for Jody. Even more happier that you were able to be together as a family for a short time. What a great picture of the four of you. This past month certainly has been quite a roller coaster ride. Praying for all of you to give you the strength you need as each day moves forward. Hoping to hear continuous good news! Thanks Tiffany for keeping everyone updated on Jody.
My heart is jumping out of joy to hear so many good things happening to you guys! It is a journey, I know, but you guys have being so courageus. Your story is inspiring!!! Yeah! Yeah!! New lungs, new life! God is so faithful!!!
Glad to hear the good news. I pray things continue to go the right direction now!
I’m glad to see that things are looking up for Jody and that he got to see his daughters. You are a inspiration, Jody and the girls are blessed to have you. Prayers for strength, healing for
Jody, girls and you.