The hospital the kids go to for their CF is a teaching hospital. It always has been. There have been many times we’ve gone to clinic and met new residents or fellows that were learning the craft from our top-notch pulmonologist. Some don’t stick around for a while, others are around for at least a year. The changing faces can get confusing when you’re in a long-term treatment plan like we are (or are terrible with names like I am). When you’re in the hospital there are some definite positives – and definite negatives. Positive – you have a team of doctors working your case. You know you’re getting the best care and a variety of input on your treatment. Negative – you have a team of doctors working your case. Every morning each member of that team comes in to check breath sounds. Not all together to get it done once…nope, one by one over the course of an hour. Positive – There are more nurses and therapists working your treatments and procedures. Negative – sometimes the room is overcrowded with people each dedicated to your care. This hospital is the best place for care. I know the people care about my child and making him healthy. I know that there are many people working his case. But it’s still overwhelming and frightening. Read more »
320 days. Not even a full year. 320 days ago Denver was admitted to the hospital for diminished lung sounds and functions. He got sick in two seconds flat, and was in the hospital 2 days later. They wanted to keep him for a couple of weeks, but he was able to go home after a week. Then stayed on antibiotics for a month. Back in the spring he had a short bout of illness that was treated with antibiotics. A month ago he got sick again. It wasn’t too bad, his lungs sounded clear. He was put on oral antibiotics for 2 weeks. Things improved… For a time… Until they got worse. Earlier this week the occasional low grade fever crept back up. Lucky for him, he had a CF Clinic appointment. The pulm put him on another round of oral antibiotics – a larger dose over three weeks again. We thought that would be it. But he felt poorly enough to skip two Cross Country practices, which meant not running in the meet on Saturday. I should have known then. I didn’t. Saturday night, after having been on antibiotics for 48 hours, Denver came to me. Being the teenager he is, he didn’t say much, just that he was coughing and it hurt when he coughed. Plus, he hadn’t been coughing before. He didn’t verbalize how much it hurt, but I could see it all over his face. The pain. We put a call into the on-call. We were given a night’s reprieve based on how he felt, and were told that unless he gets worse, we could call back in the AM and we’d have a bed ready for us when we did. And so at 7AM this morning we hustled on in. Got him admitted. Tried to work out details with the kids and our one vehicle and making sure the kid and I have all we need here to make it through a week. At least. I told him I didn’t want to be here again this year. Contrary teenagers don’t listen. Read more »
by Sarah CassMulti-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.
She is our challenge. Defiant and fiery – but so easily turns on the charm with her doe eyes and a smile that you find yourself fighting HARD to keep your smile. She’s cute as a button, and the little snot knows it too. Her whole life she’s looked her challenges in the eye and laughed. Torticollis? “Puh…watch me straighten my head out” Hypotonia? “Pshaw…you say I won’t walk until later? Watch me and my crazy crooked gate at 12 months. (And just wait, I’ll run at 15 months).” CF? “Ha! I got this…” And she (mostly) has for six years now. CF? “I told you…I got this…” But she doesn’t. Something is falling behind. It could be a tough infection that’s skillfully hidden from the throat swab. Or maybe her “poor” weight gain is exacerbating her CF. Either way, she’s not maintaining weight. In fact, she lost this time. Worse, her lung functions & saturation levels do not make her pulmonologist happy. And now the challenger of rules and attitudes and restrictions is going to be challenged again. Tests. A Chest CT. A bronchoscopy. We’re going to get results quickly. By the end of the month we should know what we’re facing next. Maybe IV antibiotics. Maybe a g-tube. Maybe both. Doc says CF is more aggressive in girls. So Doc is more aggressive toward it in girls. Doc sat on this concern for almost a year. Watching. Waiting. Believing it would improve – that K would knock it out of the park. And she almost did – back in December we were sure trouble had passed. But trouble came back. Now is where life gets interesting. Where we go on a strong offensive. Time to once again laugh in the face of this challenge. Whatever it ends up being. First step. Tests. Answers. Then we fight. Read more »