The Bradleys: quick update

Things are going pretty well. :)

Ethan went to the pediatrician last week for his lung recheck. She listened and said he sounds so much better than last time! The antibiotics really cleared up the gunk he had! But he's apparently wheezing really bad still. We did a breathing treatment in the office and she said his wheezing went away almost completely. So at least we know his Xopenex treatments are working. But about a half hour after each treatment his wheeze completely returns. That's what we've been dealing with at home too. She decided to add Flovent to his breathing regimen hoping that it will keep his lung irritation down longer.

Ethan doing a treatment at the doctor

I also brought up the fact that he keeps doing this hard blinking. It's been going on for a couple weeks and getting worse. I thought it was due to his headaches or some weird facial tic he developed, but she said it's allergies. His eyes are apparently really irritated, so now we have allergy eye drops to help with that. So far I've noticed an improvement, so hopefully they'll make him feel a lot better!

His headaches are a little better but not completely gone yet. He dropped from 4-5 headaches a week down to about 3 a week. We met with neurology last week as well and they said we can increase his Periactin (headache med) dose at the beginning of this week. I'm going to call in today to see what we should go up to. We think his ADHD meds are working well and we can just continue on the dose that he has. We also were supposed to meet with the geneticist, but they weren't available the day we went in. At our next appointment in December we will have genetic testing done on Ethan. This will mainly make sure that he doesn't have anything that we've missed.

I got an email from cardiology yesterday about Ethan's upcoming cath. They said that we probably won't get in to do this until November. They only have one full day OR opening for the next few months, and Ethan can't share a day with someone else since his caths last so long. Just as long as it doesn't interfere with Thanksgiving that'll be fine! :) We're also still waiting on the compassionate care approval to use the covered stent in his conduit. That hasn't been approved yet, so we wouldn't be able to do anything anyway. I brought up my concerns again about the bleeding issues we had from the larger size last time. We almost had to stitch his neck access closed, which would leave us with only transhepatic (through his liver) access for all his future caths. We definitely don't want this, so we just have to pray extra hard that there are no bleeding issues this time!

Ethan's sleeping is still around the same. He had a rough last week (couldn't go to sleep for 4 days for some reason). But thankfully with being glued to the sleep schedule and me scratching him until my arms about fall off, he's been falling asleep better again. He still can't make it through the night yet, but at least he's back on track with going to sleep!

His appetite is also showing signs of improvement! Up until this past week we haven't seen any improvement at all. But the past 4-5 days he's eating breakfast and some dinner! I don't know what he's doing for lunch at school, but he at least claims to be eating there. I'll find out for sure at his IEP meeting on the 22nd. He has been struggling with some belly aches and diarrhea this past week, but hopefully it'll pass quickly. At least it doesn't seem to be bad enough to stop the food! :)

Basically, things are going really well right now. Everyone is pretty healthy and we're just waiting to see when the next procedure will be. Hopefully I'll get a date nailed down soon. I like being able to plan... I'll let you all know once I find out some things. Callie has a bunch of doctor appointments coming up over the next couple of weeks, so we'll be busy with her for a little while. Also we're finishing up soccer season in these next two weeks, working on her science fair project, and girl scout outings. She has a busy October!