Going Home Today!!!!

Brett is getting his first tooth! It is so cute. We are going home this afternoon after his successful trial off the oxyge. It has been quite a week. Based on our past experience with Brett, it seems that most hospital stays end up being 7-10 days in length, so I guess for the future hospitalizations we can kind of plan on that. See ya later!




Bye UNC!!! (for now, anyway!)

Always a Smile for the Camera

Brett is so used to being photographed that I think whenever some sort of camera/cell phone looking device gets held up to his face, he is trained to automatically turn on the charm! Today he's done a little better with coming off the oxygen. Right now (4:30 PM)we're doing a trial without it, and he's holding fairly steady at 95%! If he keeps this up, we can probably go home tomorrow!

Another Day at UNC

Brett during his liver ultrasound - watching Curious George

Yesterday Brett had a good day - not very eventful, except for a liver ultrasound that was done to check for any problems since his liver enzymes were elevated. Thankfully, the ultrasound was completely normal so there does not appear to be any blockage or any bloodflow moving in the wrong direction. The broviac line is working fine and we are using it to administer the IV antibiotics. The cultures we took last Thursday from his throat have only grown haemophilus influenzae (or H. flu), which, despite the name, is a bacteria, not a virus. This bacteria has been found in healthy children as well as children with CF. We are still waiting on his cultures from Monday's bronchoscopy to grow. Unless it is something way different than H flu, though, it won't change the course of treatment. Since the remaining IV course can be administered at home by Rob and me, the only thing that is keeping us here right now is Brett body's inability to keep his blood oxygen saturation up into a satisfactory range without the assistance of oxygen. He is on only a small amount of flow (.3 liters), but when he is weaned down further or turned off, the sats dip. The doctor today said that 90% while sleeping was OK with her, so I really hope we will be able to be discharged tomorrow - Thursday. As for now, just another day waiting around at the hospital! Here's some pics from yesterday.


Me and Brett on the way to radiology

Sunset view from the 5th floor at UNC

Finished with Surgery!

Brett in recovery

Brett's bronchoscopy and broviac placement was successful this afternoon, and he was able to be extubated before leaving the operating room, which is always a sigh of relief for us. He spent about an hour in recovery then was able to come back to the room. Although I haven't talked face to face with the pulmonologist yet, she left me a note saying that the lungs were very clear, so of course that is good news. They did some suctioning and some washes to get some cultures. So far, his cultures from Thursday afternoon at clinic have not grown anything. Also, he has continued to steadily gain weight every day he's been in the hospital! This is wonderful!!!

As for the broviac, they moved the procedure up to today because last night the IV in his foot failed as well, and there just weren't any more good veins to choose from to put in a new one. They decided to just leave him alone without an IV for the night and go ahead and get the permanent line placed today. We were very happy that this was decided, because the hand and foot IVs are very painful to put in, and when they fail it is very painful for Brett when the medicine is being put in. As for our hopes for a port, he is still just too little. However, since he is bigger than he was last July when they put the previous broviac in, they were able to place a larger catheter, which should be more stable and less apt to fail. This is his 3rd broviac line.

So for now he is sleeping soundly back in our room, and I expect the rest of the night to be uneventful. Thank you for checking in with us.



This is what the recovery room looks like on a holiday - empty!


Getting a chest x-ray to be sure the catheter is placed correctly

The View from the Room

Yesterday Brett's tests came back negative for flu and negative for RSV, so that's good, and we were able to come off contact precautions and droplet precautions - which means we could all stop wearing the masks and gowns and gloves. His IV was kind of limping along, almost not working, and finally quit working last night, so he had to get a new one, which ended up being inserted in his left foot. I am not completely sure whether his breathing is better or worse, because I am not there this weekend - my mom stayed with him so I could get some rest at home and see my other boys. We all got to go to church and to lunch this afternoon, which was nice. Today has been a good day for Brett. No definitive answer yet on whether Brett is big enough for a port. I have not talked to any surgeon face to face yet. I've heard yes, and I've also heard that they prefer them to be at least 10 kilograms, and Brett is only about 7.50. Therefore, it remains to be seen what kind of permanent line he will get; however, it will be in the next few days as we are running out of veins for the little peripheral catheter. I'm headed back up to the hospital in the morning and will hopefully have more information to post tomorrow afternoon.



The pictures are of the creative "view" outside our window. It's kind of nice since otherwise it would just be the tops of buildings!