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Thursday, July 29, 2010


I’ve gotten most of my questions answered today. We need to be at UCSF at 8:30 Monday morning. PICC line will be put in at 10. He can’t have any food after 4 and only clear liquids til 8. She did warn me that they will have to put an IV into him to sedate him to put in a PICC line- aka I’m going to have to hold him down. I am not looking forward to this at all. A PICC line is really the best choice, an IV can blow out his vein because these are strong drugs going into him. Even though it may be a bit more traumatic in the beginning, it’s really the best choice.

There will be a chair that folds out into a cot where somebody can sleep at night. Either myself, Ryan or my mom will be with him at night. We had people volunteer to stay with him but I think it’s best if we just limit it to the three of us. There’s less confusion and break down in communication. We are the three people Ben is most comfortable with and I want to make this experience as comfortable as possible for him. However, we WELCOME all visitors!! If anybody wants to come visit, please let me know.

Thank you again to for all the well wishes. Thank you to my play group who put together a fun package for Ben that involves Thomas the Train. He is going to be so excited to play with it. I also had a girlfriend offer up a huge bin of toys for us to borrow. There is a play room at the hospital but if there is another CF patient also in the hospital, we will need to coordinate times. CFer’s need to stay at least 6 feet away from each other. Germs like pseudomonas, are contagious between CFer’s. We don’t want to pass on B’s pseudo nor do we want to pick up new bugs! We will also have a private room, all CF patients do. There will be community showers, a washer and dryer, refrigerator, and microwave. Looks like Lean Cuisine and I will become best friends :)

I also made sure to ask who would be in charge of Ben’s care while at the hospital. I didn’t think Dr. N would be in charge, I know he has a lot going on at the regular doctors office. I wanted to make sure I know who to go to if I have an issue. I can tell it’s very political, I can only go to specific people. There will be three residents filling the doctors orders (year 1,2, and 3), a pediatric pulmonologist attending, and a pediatric pulmonologist fellow. Plus multiple nurses. That’s a lot of people but I hope to quickly establish  comfortableness with them. I want them to know, I am no wall flower and am comfortable with all that’s going on. Two weeks is a long time and I just want to make things as pleasant as possible.

The good news is there is wi-fi in the hospital!! I’m loading up my ipod, burning DVD’s, packing books and trying to figure out if I can start a new hobby by Monday to take with me- chances are no :)

PS- R.I.P. Philip the fish. Carl is now a one-man-wolf-pack.

(if you have no idea what that means, watch The Hangover, it’s hilarious!)


  1. i love that movie. its hilarious, watch it while you are in the hole...things like that help.

    BTW, the "bed" isnt so bad...sometimes i sleep better in the hospital with her than i do at home.

    whenever skye is admitted we are to stay in the room. she is on contact precaution so its mandatory. she has colonized mrsa.
    its gets to bed stressful, stuck in a cell size room...but you get very creative!

  2. Margaux, have ya'll been in the hospital yet? If you have, this may be old hat. But in case you haven't, don't be surprised if you get woken up early in the morning with doctors, residents and others. You may want to talk to the nurses about how to minimize Ben getting consistently woken up and bothered by the staff. It seems like the docs/residents esp. don't understand how they are the 7TH PERSON TO COME INTO THE ROOM WHILE MY SON IS TAKING A NAP! So, don't be surprised and also talk to your nurse about a way to minimize this if it becomes a problem.


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