What I've Learned

1.) The Cystic Fibrosis clinic is willing to listen and work with me. A week and a half ago, just a day after Larry got sprung from the hospital Max had a CF clinic check up. It was his big annual exam with x-rays, blood draws and all sorts of excitement in addition to the usual height, weight and pulmonary function tests (PFTs measure how well the lungs work). Every thing was just ducky until we got the results back from the PFTs. Max, whose baseline runs at about 105% of a normal kid, gives amazingly good data for a child his age. He loves blowing into the tube and performs like a champ. His results were not good, he had lost 20% of his lung function since last December.

20%

That is a frightening drop.

The nurse practitioner that we love came into the room with the bad news. She sat me down and said I had a choice, we could could admit him in the hospital and give him IV antibiotics or we could load him up with antibiotics at home. I was being given this choice because they knew that I would not flake out and if it did not work I would high tail back in there (having our home relatively close to the CF clinic worked in our favor as well, I pity the families that have to drive hours and hours to the nearest CF clinic). If we chose the home route she rattled off a list of antibiotics he would have to take. First off was cipro which Max hates and is a royal pain to administer (Calcium binds to it so it has to be given two hours before and/or four hours after consuming any calcium. Max lives for ice cream so this really limits when he can have it.) then she mentioned Bactrim and another no-no for Max since the last time he got it he broke out in hives. Hospitalization was the only way to go. We could dink around for a month trying this that and another drug or just suck it up and go whole hog in the hospital.

I told her that we would hospitilze Max BUT I needed to talk to my husband first and could we delay thing until Monday. I then explained that my poor husband had literally just come home from the hospital from abdominal surgery and I wanted to give him a little more time to recover.

Her jaw literally dropped. Yes we certainly could delay things until Monday.

2.) I have the most awesome brother in law in the world. Andy happily drove down from New Jersey to help us out as long as we needed him. Since Larry could not drive, Andy would drive around and play "Soccer Mom." What most impressed me was when he went and picked up Miss Rebecca up from school, she had been crying and complaining of a stomach ache. While driving her around in his own car she vomited. He did not bat an eye or freak out about a child getting sick in his car. He loves his niece and nephews and really views them as his own. Not many single guys could do that.

3.) Hospitals are not a good place to rest up. Well I already knew that, but that knowledge gets brutally reinforced every time I spend time in a hospital. I opted to stay the night with Max and camped out in his room for the whole stay. I only went home once to do laundry and pick up some treats for us. The chair "bed" was awful. It would not stay locked in a reclined position and would pop upright if I shifted just so. Then there was the added bonus of nurses coming into the room in the middle of the night to start IVs (he got dosed with one drug every 8 hours) and the piercing alarm of the infusion pump at the end of each round. I'd lay there in the dark hating the fact that I'd have to get up to summon the nurse and hit the reset button for some quiet.

4.) I also have a really awesome friend. Meryl came to visit Max when I ducked out to go home for a bit. I needed clean clothes and I knew things would be not much better at home. Larry, because of his surgery, couldn't do laundry and I wasn't going to ask Andy to do it. Originally Meryl was only going to stay for and hour or so, but in the end she stayed until I returned. She could she he was anxious about being alone and decided to stay put.

5.) CF patients get very interesting treatments. We had a whole slew of respiratory therapists the would come in and do Max's thumpies. Max did not like having strangers at first, but in the end he got over it. I liked the break and I was able to see ways I could improve my technique. Then there was the food, but I'm saving that for a later post.

6.) There is no nursing shortage in teaching hospitals. When Larry was in his hospital he would get one nurse per shift, no more and no less. At the one Max was in (a teaching hospital) we would have the shift nurse and one or two in training. Then there were the nursing students and a few others just popping in. Throw in a few med students (who Meryl and I swear looked to be about twelve) a child life specialist, a teacher, the attending, the residents of the day and the odd extra respiratory therapist (they liked to stop by and visit) it was like a non stop party.