Hosptialization #8 - Day One (July 6)

Sick Brett at home

When Brett woke up Tuesday morning, he was not his usual smiley self. Despite a pretty good night's sleep, he was kind of whiny and lethargic. Also he was breathing rapidly -- about 70-80 times per minute, compared to his usual about 40 times a minute. We thought he might be sick, but sometimes it's hard to tell. His physical therapist was due to arrive about a half hour after he awoke, so I decided to see what happened with that session. My thought was that if he felt ok, he would perk up during the session and begin playing and laughing like he usually did. If he didn't, I thought I would take him to the hospital. Unfortunately, that didn't happen, and he wasn't able to do any therapy. He just wanted to lay in my arms and suck his pacifier. Sometimes it's really hard to tell whether we should take him or not, but with him, we've learned that we must err on the side of caution. Because lung damage is irreversible. Preventing lung damage is the name of the game in extending the life of someone who has cystic fibrosis. If we can get antibiotics going a few days sooner, that might mean that we've prevented some lung damage. Obviously, the other positive thing is that we can get him feeling better faster, avoid trips to the PICU, and usually get out the hospital sooner.

Brett in x-ray

I showed up and surprised the folks at the clinic, but the ladies know me well and know that if I just show up with Brett, driving an hour to get here, then I must really think he's sick. His doctor (pulmonologist) took him in without an appointment and agreed with me that he was working too hard to breathe and that he looked as though he wasn't feeling well. However, he wasn't presenting the way he usually does - with heavier wheezing and sometimes grunting.

When a CF patient comes in, the assumption is that there is something going on in the lungs that is causing inflammation, but we don't know what or why. There is always the usual battery of tests and procedures, beginning with a chest x-ray. We immediately went down to radiology to get one, and it showed that Brett had a definitive spot on his lung. Usually, Brett's inflammation presents as sort of a haze or a cloud across both lungs, so this was clearly something acute. The other usual tests consist of nasal swabs to check for viruses, throat swab to check for certain bad bacteria, and blood tests of all sorts, including a culture for bacteria. The main suspicion, though, is basically that he vomited some formula during the night and aspirated it, causing a pneumonia.

Brett and me hanging out in the ER

By the time we returned from x-ray, his breathing work was even harder, and he was starting to flush with fever. The bad news, they said, was that there weren't any beds available. So there was a probability that we were looking at spending the night in the emergency room. That's certainly not fun, but when you are prepared for it, it does make it easier. We went down to the emergency room to get settled in. We had waited in the ER for a bed before, so it wasn't anything new. By then his fever had spiked to 100.2, and he was just even more cranky because he hadn't really napped and getting the x-ray is no fun. The wait was shorter than we expected because a bed became available on the 7th floor. Unfortunately, it's not the main "CF" floor. This makes no difference in our care - our same doctors see us, and the nurses are great, but it's just nice to be on the 5th floor "where everybody knows your name." I'm sure you understand. BUT, it's better than spending the night in the ER for sure!

When we got to the room, the difficult part began. Had to get the barrage of blood tests. Because we had the Broviac removed last month, he has no central access for which to pull blood out of OR put fluid/drugs into his veins. The nurses looked for good veins over and over and over and he ended up having to get stuck 3 times. Well, the IV went in on the first try, so that wasn't the bad part. The bad part was getting all the blood that was needed for the labs. Then Rob came and we switched off. I went home and he stayed the night.