*Breathe*

It's been a challenging few weeks! This past week was a lot better, but it was still a challenge as Mark started his first week of school and our new nanny, Erica, began her first 40 hour week. She worked quite a bit over the summer and she's doing great!

Here is Brett's most recent PICC line in his arm. For his daytime infusions, we'd hook up the syringe and pump and put it in his backpack so he could keep playing while he got the treatment. It worked out pretty well.

Last Sunday (August 15), I e-mailed Brett's doctor to ask if we could stop the IV antibiotics. It was getting really difficult for us not to get as much sleep since you have to stay up real late and now we have to get up at 6 or 6:30 all the time. He said that would be fine if I thought Brett was not coughing as much and he was "back to baseline". It had been 17 days of antibiotics already. I thought so, so we stopped. Since he still had the PICC line, we still had to flush it everyday, though, and the next Tuesday night I couldn't get it to flush. I called that night to let the doctor on call know, and we went to clinic the next day (last Wednesday, Aug 18). The good thing was that Brett's doc got to actually see him and agree with me that he seemed well enough to come off the antibiotics. Since we came to that course of action, they just removed the PICC there in clinic instead of trying to get it to work again.

This is the wrap we put over the PICC line for bathtime. 

The bad thing for us is that now that Brett has had pseudomonas, he will be treated as if he always has psudeomonas growing in his lungs. For right now that means going back on TOBI for the rest of the month. (TOBI is the inhaled version of the antibiotic Tobramycin. When Brett gets IV antibiotics, it's usually a combination of Tobramycin and Cefepime). It's basically one month off, one month on. We are having an extremely hard time with it. I don't know what to do to make it better. It's the time commitment of one hour in the morning (20-30 minutes chest PT then 30 minutes TOBI neb right after) in addition to all the other things we have going on in the mornings, and the screaming all the day through the 30 minute inhaling. We can do the other neb (Pulmozyme) in the afternoon if we find time for that, but if we don't and we have to tack it to the night time routine, he's got to do the Pulmozyme neb for 15 minutes, chest PT for 20-30 minutes, then the TOBI neb for 30. This also falls during the time we are trying to get the other 2 kids to bed as well. We don't really have any options as far as timing goes because the TOBI doses should be 12 hours apart, ideally. He's hardly even awake 12 hours, truthfully! I'm told that 10 hours is the very least the doses should be spread apart.

Everything seemed fine until this weekend, when Saturday Brett seemed just a tiny bit under the weather. By Sunday (yesterday, August 22), he was sleepy and lethargic all day long. We do have an appointment tomorrow, but based on the way he felt I thought it was not wise to wait that long to see the doctor. Again I called the on-call doc and she made us an appointment for this morning around 10:30. Today he's actually acting a bit better. He's so complicated! The good thing is that they all realize how complicated and tricky Brett is too! I'll update when I can!