Getting ready for the big day...

[cherylchapa]

I feel the need to be organized about this so I'm putting together a binder of all the information so I can have it handy. It will have sections for medications, appointments, questions to ask, doctors' names and numbers, all those millions of consent forms you have to sign, contact list, journal, etc.

What else should I include?

 

[Eva]

You seem pretty organized.

I kept a kind of a diary-notebook when I returned home in which I wrote down almost everything: my reactions to medications, my BP, my heart rate, how I generally felt that day, which doctor did I see and what was his recommendations, my exercise progress, etc. I, nowadays, refer to it sometimes to compare now and then.

Good luck and best wishes.

 

[hall]

I wish I would have written a journal. I remember very little.

 

[Lynlw]

Ca Heart Connection has alot of different forms you can download, I don't know if any of them will be helpful to you but here's the link http://caheartconnection.homestead.com/Handoutsandforms.html

 

[marie]

I wish I would have written a journal. I remember very little.

I feel the same way
Earline

 

[Lynlw]

I wish I would have written a journal. I remember very little.

That is one of the things I like about having a caringbridge or carepage, since you write updates daily or a couple times a day in the beginning to let everyone know what is going on, we have a pretty good record of what happened when. I've gone back and reread it a couple times when I was trying to remember something. The hospital/surgery time pretty much ends up being a blur from me (especially since Justin had 5 OHS and 2 other heart related surgeries) I wrote things in notebooks ect when Justin had his surgeries as a baby/toddler but I have bad writing to start with so being exhausted on top of it, half the things I wrote I can't even read or figure out what I meant lol (and I REALLY like having all the messages people left to read)

 

[RI Mom]

Great idea Cheryl!! I have a large binder that zips that I started when Idrees was a baby. He has a syndrome that includes multiple abnormalities of the anatomy so I divided mine by each specialty (ie. pediatrics, cardiology, urology, etc...) and that has helped me to stay organized over the years. It is a good idea to write things down that typically you would forget over the years and may need again someday. For example, during Idrees' last OHS, the ECG leads were placed during surgery and kept on throughout recovery. When they were removed, several of them had burned his skin. He has one burn mark that is the size of a golf ball and is a permanent scar. That is something that I wrote down and will remind the team of this time so that they can either use different "stickies" or move them around throughout the stay.

 

[DebbyA]

Cheryl,
You sound really ready. I just had a spiral binder that I carried to every appointment.

Two things I wish I had done--found out and had handy the patient relations (or whoever you talk to when you think care is mismanaged) telephone, and kept a record of nurse's names to thank them later. I had much more need of the latter than the former. At the time I thought I would remember those wonder nurses' names forever, but later couldn't remember much at all.

 

[zipper2]

Cheryl (great idea) you sound very organized
Can't add much more for you

zipper2 (DEB)

 

[briansmom]

Maybe include a notebook so that visitors can write their get well wishes or you can write down who came and who brought him presents. I was amazed at the people that came to see my son and how much stuff he got. We also kept all of the cards Brian got. He found them in his room a couple of weeks ago and was amazed at some of the cards that he got (and had forgotten about).