Our Home Away From Home. . .

I've had some ask about how we spend our time in the hospital here.  That's a really good question.  Life here has a rhythm and culture all it's own.   I thought we would find people we would see constantly, but it seems life is pretty transitory here. People are coming and going. At this point, 12 days into our adventure, we have "lived" on every floor of the hospital.

Our first night was spent in the Post-Op Recovery Room.  One small fold out bed for a parent.

Surgery Floor (3rd)

Immunocompromised Unit (ICS) 4th Floor

Pediatric Intensive Care Unit (PICU) 2nd floor.  No bed in this room, just a reclining chair.

Now the Neuro Trauma Unit (on the 2nd floor)

One of us spends the night on the fold down bed in Brendan's room.

Moving rooms is always a challenge.  Everything has to be gathered up and transported via wagon to the new room. We've whittled down to the bare minimum in order to move again and again.  When Brendan heals from the brain surgery, and does some rehab work to get walking again, we will be moved back up to the ICS unit for chemo treatments.

Our new room in the Neuro Trauma Unit

Showering is probably our biggest challenge.  In ICS they have parent showers down the hall from the rooms.  Here in the Neurotrauma unit they have one shower, but it is not working.  So we usually have to go to the Ronald McDonald Family room on the 3rd floor where they have showers for parents to use.   But you have to wait until 9 a.m. when they open.

Speaking of the Ronald McDonald Family Room -- let me just say -- it is wonderful!  The facility is a lifesaver for parents.  The Ronald McDonald Family Room is located here in the hospital on the 3rd floor and has 4 bedrooms, 2 showers, 2 restrooms, a "charging" room for phones and devices (as well as private conversation), a family room, computers with internet, and a kitchen and dining room area.  (They also have other facilities outside of the hospital for longer term stays.)  On random days and nights, groups or businesses come in and provide meals for the parents.  They feed from 30-60 people and provide a free, home-cooked meal and a chance to visit with other parents.  It has been a wonderful thing to visit with those who bring food, fix it, and serve it to help those of us who have no home meals anymore.  I am so grateful for their time and generosity.  It feeds us body and soul.

Dinner is served!

 Family time in the Family Room.

Reclining chairs to sleep/relax and enjoy the best view in the hospital.

 The amenities are great when Brendan is up and about, but after surgery he is in his room recovering and one of us always tries to stay with him.  So one grabs some dinner, then comes back to the room, and the other goes for dinner.  Not exactly family dinner, but we're always glad for a warm meal.

Our social worker reserved a bedroom for Shaun during the brain surgery so he wouldn't have to leave the hospital that night.

One thing we never thought of before was how to clean clothes when you are at the hospital for an extended stay.   Both the ICS unit and the Ronald McDonald Family Room have washer/dryer facilities with laundry detergent for parents.  These came in especially handy since we didn't come ready for an extended stay. 

  One of the hazards of hospital life for me are the dry, cracked hands from washing them so much.  Even with lotion I struggle to keep my hands from hurting.  Now I know why all the care packages had lotion in them :)

And did you know they actually have an LDS branch right here at the hospital?  Now I do.

Mostly life here is up and down.  Good days and bad days.  Hard days and easy days.  Most are mixed up with moments of both.  One of the hardest adjustments for me has been having absolutely no place to be all alone.  The shower is great, but you usually only have a few minutes before someone else needs to shower, or there are doctors waiting to talk to you, nurses needing information and tests waiting to be done.  It's all a little bit much sometimes.  

While no one ever wants to be here, at least they try to make this place as pleasant as possible.  Each morning a cart with muffins, bagels, and fruit is wheeled around so that parents can grab a bite to eat. The speaker announces if there is a meal being served in the Ronald McDonald family room.  And all the nurses are super with kids.  Overall, this place is an incredible place to be if you have to be here!