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!’