Day 4

This morning I was looking forward to going home.  We got up and started going through our stuff, organizing, and getting ready to throw it all into the suitcase when they said the word.  Actually, I did throw some of our stuff into the suitcase.  I guess I thought that I could just say we were done and no matter, that would be it.  Well, I was wrong.

The residents and attending doctor (Dr. Sagel, who is the CF Center director here) made their rounds around 9am.  I listened to them talk about Finn, his history, his test results, and his current treatment plan and response.  It was all dead on and I was pretty impressed because the resident who presented the case hadn't asked us all of those questions.  It was clear she had done her reading.  In her report I heard her mention that Finn's bronchoscopy cultures were coming back clean (in other words, no bacteria was growing) but that it did indicate "significant inflammation".  After the report was given, Dr. Sagel asked her a few questions and then asked me something.  I can't for the life of me remember what it was.  I know I responded and then he asked if I had any concerns and I said only that we would like to go home!  Let's be honest, who here doesn't want to go home.  From his reaction, I knew nearly instantly that that wasn't going to happen.  He said he would come back and talk to us later.

Later in the morning I asked the nurse if she knew when they normally came back to actually talk to us.  She put a call in to the pulmonology team and asked.  They didn't know when, but they did say he would be back at some point that afternoon.  So, we spent our morning walking around the hospital again and going outside.  The only play center open in the whole place was the one for siblings and they wouldn't let Finn play.  I was discouraged and emotional.

During Finn's nap I decided to lay down, too.  Not too much later there was a knock on our door and there stood Dr. Zemanick.  She's Finn's primary CF doc and I really like her.  I was happy to see her and here what she had to say.  She told me that the bronch did not grow anything, so the good news was that he doesn't have Pseudonomas.  However, there is some sort of cell count that they use to indicate inflammation (and for the life of me I can't remember what she called it) and Finn's came back at 90%.  The resident wasn't kidding when she said there was "significant inflammation".  So, my big question was how can all of these test results, CT scans, and x-rays show that there is lung damage going on when Finn is pretty much symptomless.  He's an energetic little boy who runs around like there's not a care in the world.  Her thought was that the majority of his airways are still clear.  These inflamed airways seem to be localized right now to his upper lobes (on both sides) and they are deep in (or more towards the ends of the branches), so I guess it's not affecting him as badly as it would if it were in a different location.  My other question was how could we have this inflammation if there were no bacteria.  The doctor that rounded this weekend said inflammation equaled bacteria and there seemed to be no other alternative in his opinion.  Dr. Zemanick said that while he may not be growing enough bacteria to culture maybe he encountered a tiny, tiny amount and his body is just hyper-reactive.  I think I'm going to have to question this again because that seems a bit odd to me.  Anyway, after all of the talk she said that the doctors all agree that we should complete a one-week round of IV antibiotics before going home.  At that point we'll probably be taking home a couple more medications, too.  (Just what we needed!)  She said, therefore, we need to stay to Friday.  I had my heart so set on going home today that I had a hard time holding my emotions in check.  In fact, they nearly got the better of me, but I told her that even though this is a hard time on us, if it is what's best for Finn we would make it work.  She did understand that this is not easy, though.  We talked about that for quite a bit actually.  (Our social worked had come down at the same time, too, so that was nice.)

Now that I've gotten used to the idea of staying all week, I'm not as emotional about it.  Don't get wrong, I want to go home, but if this is where Finn needs to be then I'll do it.  I'm tired and really need a break, but Finn needs me.  So, tonight I'm running laundry in the family lounge and chinning up.

In other news, this afternoon we found some new things to do.  The playroom was finally open again and we spent a good 40 minutes in there.  We found some train tracks and trains and checked them out to bring back to our room.  Those have kept Finn busy and happy most of the evening.  Also, we had a pet visit from a dog named Remi.  The dog was so good to lay there and let Finn use his stethoscope to "listen" to her.  It's funny how at first Finn didn't want to touch her and get too close, but once we pulled out his toy stethoscope that his nurse had given him, he was very happy to interact a bit with the dog.  Finally, after that Finn took a bath.  I had a hard time getting him in there at first as he insisted he just wanted to go home, but once he got in he didn't want to get out.  We played peek-a-boo with the shower curtain and I let him splash as much as he wanted (since I didn't have to clean it up).

So, that's the update for today.  I'm grateful for a friend that I can call and just ask to help me figure out childcare and know that she'll take care of it for me.  Within two hours, we had someone to take Kai every day this week and I didn't have to do any of it.  It was nice not to worry about that.  It's nice to know that my boys are being taken care of while we're away, despite the fact that I'd prefer to do it myself.  With that kind of help, we'll make it through this and hope that we don't have to do this again for a good loooooooong time!