Light at the End of the CVICU Tunnel

Monday evening, as they were giving Amanda her meds, she asked about one that wasn’t there. It was the main anti-rejection medication. There was a glitch in the new system, and if Amanda had noticed it, she would have missed the dose altogether. Upon further investigation, the nurse realized she had missed it the day before. It was in the system, but not populating to the med pull list. Good thing Amanda is super compliant with her meds and noticed the missing one.

I got some Singapore noodles, thin vermicelli type, stir fry for dinner, along with some broth for Amanda to dip them in, in case it was too dry. She ate a little, but she seems to be getting full quickly. I got everything ready for her so I could slip out to the open mic night. No matter how ready I get, Amanda is going to need something before I go anywhere, mostly nurse duties. I have been getting overly frustrated with things like that. What my time away made me realize is that I need a little more time away from these walls and being constantly “on duty.” Even though this is only week one or two for Amanda, this is a month of sleepless nights, some worrying if she was going to live or die some nights. 

Sometimes I just need a breather from this this place. It got so late, I said I wasn’t going to go to the open mic. It isn’t even about the music there; I’ve made friends with some twenty-something musicians and restaurant crew. It’s a break for me to go and pick on them and have fun, if only, a few minutes of a good time. I finally left and went there even though there was only 30 minutes left; I knew I would just be mad at Amanda if I didn’t go. They were worried I wasn’t going to show up by the time I arrived. The girl who sings, Jordan, had just arrived earlier in the day from her hometown in Pennsylvania. Having just graduated from Bellmont, a nearby university, she is now a preschool teacher. She doesn’t have a typical summer off schedule, but had a week off to spend at home. Her parents had come back with her and were at the open mic, so I got to meet them. I spoke with her mother a bit. She said Jordan had mentioned me and told them about Amanda and how I just kind of fit right in with their little open mic night group. I stayed a whilel listening to the regualr crew and a new guy sing a bit, then headed back to the hospital.

Tuesday, Amanda was looking better fluid-wise, but she was super nauseous and her stomach hurt badly. Her hands had been really shaky since Monday afternoon, too. She was just feeling terrible all around. Everything looked good on the labs, echo, and X-ray. It seemed it was going to be a guessing game, or a game of elimination. Since she wasn’t feeling good, I wasn’t going to push and keep her awake. So, I just had music playing. I noticed our nurse, a new one, quietly singing and humming along. During rounds, the fellow noticed the song I’d paused it on, The Prodigal by Josiah Queen. He said he liked that song and mentioned somewhere the artist was playing. I’ve been amazed by the nurses and doctors who’ve either sung along with the music or commented on it. A few on this floor have mentioned how uplifting it is to come into our room or to walk by and hear the music. This isn’t uncommon for us to play worship music in a hospital room, but the number of people commenting or singing along is. They don’t call this the bible belt for nothing, I guess! 

One song in particular I mentioned to my brother-in-law was Too Good Not to Believe. I couldn’t remember the name, but finally found it and sent it to him. There is a line in that song that speaks of families being restored. That line sang in church with Amanda’s mother behind me, worshiping always brings me to tears. I was estranged and kept my distance from my in-laws for a long time. Not for the typical reasons and ones I won’t go into detail about. But to see the change in my mother-in-law has been remarkable. I cheered at a low point in my in-laws’ lives; I reveled in it. To come from that to cheering at her baptism was humbling to see how God can restore families; only He can do that. Not to mention how my father and his brother had a falling out when I was young, which led to my never knowing my cousins on that side of the family. Now, they are solid prayer warriors for us, and I communicate with them more than the cousins, whom I’ve known my whole life. That song speaks to the miracles we’ll see. Speaking of the things we will see God do in the future because of what we’ve seen. I’ve seen enough in my own life to know that we have miracles to see yet. “I’ve lived stories that have proved Your faithfulness,” the song goes on to say. We have lived that line more than I can recount; we’re living it right now. 

She was feeling a little better in the evening, but not great. I planned to head to the apartment on Tuesday night. I had been planning it for a bit, having a bunch of stuff delivered there to force me to go. Also, being away for a few days last week made me realize I need a break from this place more often. It’s getting harder and harder to get decent sleep here in this room. Especially after the last few nurses have blasted the lights on at 5 am and never turned them off. Tuesday night was going to be the first night Amanda wouldn’t have anyone there all night. She was in a good spot for me to leave, though. I grabbed some Cracker Barrel on the way home. Amanda just doesn’t like that place, so I was going to take advantage. I’d planned to eat right away, but I ended up opening all my packages and had to heat up my dinner. I crashed shortly after eating, not getting much done around the place.

She was doing better this morning. I called the nurse, and she mentioned that Amanda told the night NP that she had a hard time swallowing pills. So they put her on NPO till speech therapy came by. I was worried about a feeding tube when I heard that. The nurse wasn’t much help when I questioned things, so I just told her I’d figure it out in rounds. The stomach pain was still there, but not as bad. They decided to up her bowel regimen. I was just hoping not too much like last time. At least speech therapy came by early and cleared her. They did mention doing an X-ray while she swallowed something to follow it down, checking to see if she is having issues in the esophagus. I think she is anxious about the chest tube being pulled; she is correlating everything to that since she felt bad afterwards last time. The mention of the X-ray reassured her a little.

This morning she walked a little bit, but not a ton. They did the first standing weight during the PT walk; she was about 15-20 pounds under her base weight before transplant. The little eating over the past month has caught up with her. I’m sure she’s lost a good bit of muscle, too. She ate a decent amount of the Chick-fil-A breakfast I brought in. I did get on to her about eating since the ICU attending was questioning me hard about how much she’s been eating. She’s the driest I’ve noticed since transplant. Her legs are getting smaller, and her arms and chest look better too. I’m worried about her swelling back up since the CRRT was stop this morning, though. She did make urine today, but they have been pulling 3.5 liters a day off over what she’s taking in, so her kidneys haven’t had a chance to make much with that much coming off. We need them to wake up, and the intermittent dialysis to keep the fluid retention at bay. The dialysis isn’t scheduled till Friday. She’s getting there, I’m guessing they’ll be pushing to get us out of the CVICU if things stay the course, by the weekend. 

The temporary pacemaker wires were removed today. They literally rip them out of her heart. It always freaks me out when they just yank them out! The wires are just lightly stitched to the outside of the heart and come out of the sink in the upper area of her stomach. The NP removed them and was gentle, more so than the surgeons who normally yank them out. The last remaining chest tube was supposed to be pulled after it was clamped off for a while, and an X-ray confirmed it’s good to come out. But she was having tummy gurgling sounds that seemed to be close to the chest area that stopped after they put the chest tube back to suction. The surgeon told the NP to be sure if pulling it was the right thing, to get a CT first.

They also noticed a spot on her groin that had been used for a catheter during the surgery, it was oozing. So, wound care came by assessing things. She checked it out along with some other spots Amanda was having issues with on her lower back. They said the groin spot wasn’t infected, and the spot on her back was a bedsore and ordered some treatments for them both. After that, I was trying to get Amanda to eat a little more, so I asked if a milkshake sounded good. She thought so, and I ran to Hopdoddy to grab one. Brett gave me a hard time because I had my hair fixed and no cap on. Since I was at the apartment with no threat of a nurse walking in on me in the bathroom, I fixed it. It’s almost like a lion’s mane, still not long enough, but to my shoulders at least now. The PT this morning also gave me a hard time about no cap, as well. I chatted with everybody for a bit, then came back with the milkshake.

The Prograf, the main anti-rejection med, levels were high today by a good bit. So they held the night dose, and Amanda was questioning where it was. The high level quickly told me that the shaky hands were from that. Amanda can usually pinpoint that quickly, but she has so much else going on, I’m sure the other signs were masked a bit. She was shaky after the first transplant, too, so it’s not overly concerning. Another biopsy is scheduled for tomorrow, a little early, to check if the 2A rejection is gone and double-check the AMR status since the stain for the antibody portion was inconclusive but still showed something. The way things go with the cath lab around here, I feel the biopsy will be Friday, though. We are still waiting for the CT scan to happen today, but it might get pushed to tomorrow, as well.