17 May 2011

Been there. Done that.

If there is one thing I notice about myself at the hospital this time around it's my confidence. I know the routine. I know what it's like when we are first admitted. We meet our nurse. We meet every other person of the team. Someone from the hospital comes to talk to us about insurance. Even the chaplain makes his round...usually the first and only time we see him.

(I knew when I saw a new stuffed animal in our room, the Chaplain had come by while I was gone. At Scott and White, it was a Prayer Bear. This time, we got a Prayer Lamb. I joked with Brian that we're gonna start collecting a Prayer Zoo after a while.)

I know the first day is the hardest. The schedule is off. They don't know you. You don't know them. Eating on the first day always involves a hunt. Where is the cafeteria? Where is the soda machine? Where is the nearest restaurant?

I know that it seems we never seem have enough staff people involved in our case. Just as we think we finally have met all of them (doctor, CNA, nurse, nutritionist, respiratory therapist, child life specialist, charge nurse, etc.), a new shift comes on and all of the positions come back around for a visit. This time, I got wise. During our Playroom time (aka when the Child Life Specialists give your kids special attention, allowing you to work quietly on a project in the background), I made signs for the door.

Sometimes, this won't work. If Bennett was sick, for example, my nurse and I might have a go at it. She, convinced checking his vitals every few hours per night is imperative, and me, wondering how in the world he has lived up to the point without the constant interruption at night over how fast his heart is beating, would likely battle out ways to best serve my son's needs while at the hospital under her care.

But, fortunately, since Bennett is a "Feeder" (the slang for a patient in the Feeding Clinic here), the staff is more lenient. They know that since he isn't necessarily sick and they are here mainly to monitor his weight and health while we change his feeds, what Momma says is probably best.

I've been able to convince them to keep Bennett's schedule (and therefore our schedule) to about what it is at home...his nap, sleeping and feeding schedule. We have also told the Respiratory Therapists to take a hike. We know how to care for Bennett best with regards to his Vest and nebulizer and we appreciate the space to do so.  Again, they've been happy to oblige.

I'm incredibly confident with the nurses.  I know what my rights are and how to ask for them politely.  I also know what they need from me and I've been able to give up some minor things I prefer in order that they feel in control of their patient's care.

We packed much better this time.  We have most of the things we need.  And we know what the hospital does and does not have to help us.  The sights and sounds of the hospital are still annoying.  But we're learning how to turn our room into a haven, without trusting the hospital staff to do that for us.

We know hospital time crawls by.  Things that seem they could take an hour will take 24.  And we're adjusting well to this rhythm.  No rush.  No important information to come quickly.  No discharge any time soon.

I feel much more accustomed to this environment than ever before.  I can't ever imagine liking it.  But I suppose I might be able to hate it some less.

I did mourn a bit for Oliver today.  This is a very scary place for him.  I hope it will feel normal and not scary at some point.  But it's not normal for him to live his life in a hospital, no more than Bennett, I suppose.  But he isn't ever the patient, only the family.  And it's a bit sad we have to drag him along with us on our hospital escapades.  Thankfully, the Child Life Specialists are noticing him more (probably because he's getting older and can start talking to them).  I'm hoping to better utilize the Child Life staff with regards to Oliver and work to helping him feel the hospital is less scary.

Our new normal is feeling more normal.  And this is good.  I'm feeling more confidence and know I will survive.  There is a discharge date for us.  And it will come.  Until then, I'll continue making our new "house" a home.

1 comment :

  1. I totally "get" your handmade posters, out of control vitals, thoughts of "letting them know who is the mommy" happenings that the hospital. I LOVE THE SIGNS and a great way to let the staff know before the interruption happens. It must be hard being there but man, You are doing such a great job being the best advocate for your boy!


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