Post date: Apr 7, 2011 4:12:23 PM
Natalie spent 23 days on a vent following her transplant in 2005. 23 long agonizing days.
Her hepatic artery clotted. They opened her up and fixed it.
They left her open.
They closed her up.
She had a major bleed.
They opened her to repair it and it stopped (remember when I mentioned that miracles happen?).
And she lay in a crib for 23 days.
It is not easy to sit in the PICU staring at your child for 23 days, wondering, thinking, letting your mind wander. The PICU can mess with you. You see people leave, graduate to a new floor! You see people leave forever without their child. You see heartache. You see joy. And you wonder where you will end up when it is all said and done.
That’s the PICU for you.
You need some sanity. You need some “normal.” There are things that I wish I knew and things I learned along the way (there are also some things that I should probably repress – but we’ll talk familial mental stability at a later time).
10 things I learned in the PICU:
1. Bathe or shower daily. You will forget to do this. My sister gave me some scented soaps and I was in heaven. Albeit PICU heaven with my own Jackson-Pratt drain, or JP drain, following the living donor surgery. Let your worries wash down the drain during a 10-15 minute shower.
2. Get outside. We, J and myself, used to frequent Chipotle across the street from the hospital. The staff treated us like family. I wrote to their corporate office and sang the praises of this location. They sent me gift cards for 10 burritos!
3. Get into a routine if you can. Watch the same show at the same time every day. Update your website or family and friends at the same time every day. Get a cup of coffee or a latte every day.
4. Sing songs with your child. Play music. Bring an ipod with a mix of upbeat or soothing songs on it. We used to use a noise maker and keep the lights low. Our nurses used to comment that they loved coming into our room because it relaxed them.
5. May the PICU room a “stress free zone,” as much as you can. For your child. Discussions, arguments, worries can be had away from your child.
6. You may or may not be able to stay with your child. Call Ronald McDonald House. We stayed at the Kohl’s House near Children’s Memorial. The cost was supposed to be $5 a day. But we were told that someone paid our stay for us. Make sure you talk to a hospital social worker about your need to be close to your child.
7. Be active in your child’s care. Make sure you are present for Doctor’s rounds. Ask questions. Do not let them talk past you or over your head. Some days they are in a hurry to finish their rounds. Slow them down. Make sure you understand everything they say and make sure they understand you before they walk away and move on to the next patient.
8. Take notes. Keep a journal. Write everything down.
9. Be your child’s advocate. Stick up for your kid. Never be complacent. You are your child's best advocate.
10. Find support where you can. I recommend www.liverfamilies.net My best supporter was and is my husband - but you can't have him - LiverFamilies is the next best thing!
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