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This is really hard…

November 6, 2010

We have been living day by day, sometimes hour by hour recently, which is NOT a typical way of living for me.  I am a planner, a quintessential type A personality, but with perspective.  I like to think that having perspective helps to tone down some of the annoying characteristics of a typical type A person.  We were in-patient for seventeen long, very stressful, extremely emotional days, and when we finally saw a light at the end of the tunnel, we became anxious and may have rushed the process just a bit.  There is A LOT of preparation that needs to be done to take care of Lucy and I don’t think that we realized until we got home last night just how unprepared we were. 

We have an infusion company that is in charge of getting us all of Lucy’s new medical supplies.  They also have a wonderful infusion nurse, who we just happened to meet way back when we did the NG tube movie for DuPont.  He is assigned to our case and met us at the hospital and at home last night.  His role is to help us with all of the care and treatment of Lucy’s central line and TPN.  Medical supplies galore have been delivered to our house and we need to get organized quickly so that I can keep my sanity, and also so that the things that need to stay sterile don’t accidentally get opened by curious hands.  We had to get a separate small  refrigerator just for Lucy’s TPN because you can’t store TPN on a shelf with any other items.  Lord knows every single inch of refrigerator space in our house is always occupied.  Our changing table is now our official TPN table.  I wiped the entire thing down with rubbing alcohol, and the new mini refrigerator, and the bins in which we store the TPN…My hands are raw from wiping and sterilizing, washing and sanitizing.

In addition to organizing our home for Lucy’s medical needs,  we needed to organize a med schedule for our little one.  She is currently taking ten different medications dosed two or three times daily.  In the hospital they were dosing her on a 24 hour schedule which works well when you have nursing care around the clock, we don’t have that at home so we had to create a new med schedule to meet our needs.  Thank God for our nurse Helen, she has taken on this responsibility with a little help from Lucy.

Of course in addition to all of the organizing, sanitizing, and stressing, I still had to do all of my usual mothering activities which I have missed but have to admit was a bit overwhelmed with today.  It is going to take some time to adjust to all of this… 

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Michelle and Sean said...

When Maggie was put on TPN I felt the same way. We didn't even have anyone to show us how to work anything they said that our nurses should know but they didn't.

You will be okay. Try not to stress to much (I know its easier said than done). When I would get overwhelmed I would sit and take a few deep breaths and try to calm myself and it seemed to work. Trust yourself. You will be a pro in no time!!

Still praying for you guys! Praying things will pick up in the tummy area so she can get off the TPN.

Jessica said...

I can still get overwhelmed at times, especially because E *has* to get meds all night as well as all day due to the types of meds she's on, and sleep deprivation can really make everything worse! In general however, everyone adjusted to the new amount of medical chaos in life, and on we went! Soon you will be an organized TPN diva, doling out advice to other newbies :)

Heidi said...

Praying the TPN is temporary, taking care of our kiddos can be so overwhelming at times. Im glad Helen is a good one! Hugs and prayers always for Lucy--
Heidi & Jack.