Days 5 & 6

I'm 2 days behind on Finn's stay and it's all starting to become a blur.  So, I better catch up.

Monday night into Tuesday morning Finn woke up screaming twice.  He set off the heart rate monitors and the nurses came running.  I quickly asked them to leave because I knew that their presence wasn't going to help.  It took a few sips of apple juice for him to calm down and go back to sleep.  In the morning the nurses asked if he was having night terrors and after talking it out that seemed to be the most likely explanation.  In the morning he was good to go again, and we went down to find the playroom open.  We had a good time in there and played for nearly 2 hours it seemed, before having to go back for RT.

That morning we also had a good chat with Sarah, Finn's resident doctor.  She said that Finn's culture had started to grow H. Flu, which was the same thing that had shown up on his throat culture 2 weeks earlier.  The H. flu could explain the inflammation, I guess, except that in general H. Flu is one of those bugs that they don't really worry about with CFers.  The fact that Finn had been on 4 weeks of antibiotics, though, and was still growing H. flu was interesting.  I asked Sarah if that meant that because of his hyper-reactive airways we would end up on IV antibiotics every single time he started to grow anything.  She told me that there were many more stronger prescription antibiotics that we could use and that IV's shouldn't be the only answer.  That was good to hear.

After RT he took a nap, got his IVs, and then we were off to the play again.  (I can't remember what we did, but I know we were out of the room.)  We had Rt again at 4pm and then our Relief Society president showed up to give me a break.  She played with Finn in the room while I actually left the hospital to pick-up something I needed from the grocery store and grab a burrito at Chipotle.

When I got back a little before 6, the Harley Davidson Owners' Group was serving pizza on all of the floors.  So, the 3 of us grabbed pizza and headed back to the room to eat.  We visited with Liz for a while and also took her to the playroom before she headed home, Finn got ready for bed and did his RT for the final time.  For the first time during our visit, Finn was awake after RT and so we went through our normal good night routine (with prayers and everything) and then Finn laid down in the crib by himself to go to sleep.  Since I had been feeling oddly, I decided I would go to bed early.  I laid down in my bed while Finn worked on going to sleep and before I knew it, I had fallen asleep, too.  I had planned on doing another load of laundry and blogging, but I felt so crummy that I decided I needed the rest.

Staring out the window

 In the middle of the night on Tuesday, once again Finn had another night terror.  It took longer to calm him down this time and then I laid awake for a couple of hours afterward.  I started thinking about what Sarah had said about letting her know if the stay was becoming unbearable, because then they could re-evaluate letting us go.  I realized that for me there was very little that could be unbearable as long as I knew I could go home.  I'm not one to just quit what we have started.  However, I also realized that Finn didn't understand what was going on.  He had spent the last two days sprinting for the parking lot whenever we went outside, calling for Kai whenever we went into the lobby of the hospital, and asking me to look at family pictures and videos of his brother whenever he could.  And now he was having night terrors.  I came to the realization that while I understood we would eventually go home, he didn't.  And I couldn't explain it to him.  I thought about how we talked about other antibiotics being available and how he really was only growing H. flu.  I thought about how I could do all of the RT he needed at home (as it was no different than what we were doing anyway) and that the only thing I couldn't replicate was his IV antibiotics that he got every 8 hours.  I decided to talk to Sarah again in the morning about the possibility of going home.

Finn woke up happy and ready to go again on Wednesday morning.  We got dressed and headed into the halls to cruise around the riding toy he had checked out from the playroom.  Not too much later, Sarah came to check-in on us and ask about the night.  I talked to her about his night terrors, and she, too, agreed that's what they were.  Then I asked about what she meant by "unbearable".  I told her that if she really felt 2 more days of IVs were really important, we could push through and I would push Finn through it, but I also told her that I thought Finn had hit his point and really wanted to go home.  She did not think it was "unreasonable" to go home and agreed to talk to Dr. Sagle about it.

We ate breakfast, did RT, visited with our nurse, and played in the playroom for an hour or so before they rounded the floor.  Once again, Sarah presented our case and then talked about Finn being ready to go.  This time they all agreed that if we were comfortable with the progress he had made, that we were ok to go home.  I agreed that I was comfortable with where he was at, and so they gave us the instructions for going home.  Finn is now on oral antibiotics 2 times a day for the next few days and then he'll go down to 1 time a day for the indefinite future.  We also were to come home and continue using the hyper-tonic saline that we had started at the hospital with his RT.  We did one last IV infusion around noon, an RT session, and then the nursed pulled out his PICC line and we were free to go home.

Cruising the halls on his little car

We got home yesterday around 2:30pm.  Finn was so happy to see his daddy, and not too much longer later Kai came home.  Finn was smiling and happy the whole afternoon.  He slept like a rock last night for nearly 12 hours and when he got up he said, "I'm happy."  Later in the morning I heard him say, "I'm happy again."

I'm so glad that our little guy is home and doing well.  We're both happy to be back at our house with family.  I wouldn't be completely honest if I didn't say that it worries me a little that we did not finish the week of IVs, but I'm trusting that the decision we made was the best for Finn in that moment.  Before checking-out, Dr. Sagel came to talk with me one-on-one and he ended with patting me on the back and telling me I was doing a good job.  I sure hope so!  And I sure hope that we don't have to go back for a good long while to come.  One of the reasons they had pursued the IVs was with the goal to keep him healthy all summer.  So, now I'm just praying that we do that.  That we enjoy the summer without any incidents, that I don't have to call clinic to tell them he's sick again, and that we can somehow get us out of the awful pattern we have been in for the last 6 months.  That was the purpose of all of this and I sure do pray it worked!