Hospital Stay #3 Day 2

Wednesday, June 25, 2014
Movers will be here any moment, so I don't have too long to write, but I wanted to update friends and family members so you can know how Sam is doing. I also want to lay out a few frustrations so you can know how to pray for me (or tell me to calm down and get over it).

We finally got the PICC line in her around 12:30pm yesterday. As Sam was not actually scheduled for any procedures (because she was essentially an emergency admission), we had to wait for a slot. This is a minor frustration, except that there is almost zero communication between the staff and the parents when it comes to something like this. I can't imagine that it would be too hard to say, "I'm sorry, Mr. Smith, but we're probably going to be waiting until nearly noon or so before we can start the procedure." Then I could say to Sam, "Hey baby-girl, we're going to have to wait awhile, but we'll get in there around lunch time and then I can order you some food so you can eat as soon as you're done."

Instead...crickets. Very frustrating.

I also asked about how long the antibiotic regimen was going to be this round (we've done 7 days before and 10 days). I let the resident know that it was vital to have good communication as I am less than 2 weeks from HAVING to report to my ship.


I love the doctors and especially the nurses at Children's in Milwaukee, but I was so close at a few points yesterday to going crazy with the lack of communication. I'm not asking for her to get better tomorrow, I just want to have an idea of what you're doing, how long you expect it to take, and any contingencies.

Maybe it's the military man in me. Give me a plan and a backup plan. If it doesn't work, we'll look into plan C. This isn't hard. Communication is the key.

Some more experienced members of the CF parenting community may not understand why I'm going out of my mind, but I can't be the only one.

On a good note, Sam's appetite is getting better, as evidenced by the picture below.
Yes, it's unhealthy...but when one is in the hospital, one does not judge the food choices of someone else.

She is also frustrated, but mostly because the PICC line is not comfortable. I rewrapped the ace bandage around it (she has to have a bandage because it freaks her out to see the gauze), but it still bothers her. And she still has the IV in her for a reason I couldn't ascertain. I'm sure Alicia will get to the bottom of it.

Yes, it's a fact, I've been frustrated by this experience. This is our third hospital stay and it seems like we learn less each time we go in. I hate this disease because it doesn't make sense, but I also hate the near complete lack of communication. Alicia is better at getting information than I am, so hopefully she'll have more soon.