Ella's an Uptown Girl Now!

Yesterday was a tough day......for all involved!  Ella was airlifted to The Children's Hospital in Aurora, CO.  Which is basically Denver.  The team from the hospital arrived in Bismarck around 10:30AM, got report from her nurse and Dr.O, Ella and her family said their teary goodbyes, and off she went at about 12:00PM.  She arrived at The Children's Hospital around 2:30PM I believe.  During her travels I called down there to get the downlow on the rules/times the PICU has.  They have report from 6:45-7:45 AM and PM.  They don't let anyone in the unit during the report times, but if you are in the patients room during that time you can stay in there.  Visiting hours for parents are 24 hrs a day, grandparents 8AM to 8PM, and everyone else is 8AM to ?  I just had a mind block.  Oh well it's not that important anyways!   

Apparently her flight was sort of rough.  Ella's been having seizures quite frequently the past couple of weeks and this past weekend she developed a fever.  She had a couple seizures on her flight, and the nurse told me it didn't sound like she enjoyed her first plane ride very much :(  I don't blame her I hate flying too! They are giving her Motrin to control her fevers, but they are still try to figure out why she's having fevers.  Fever usually means your body is fighting an INFECTION.........and infection is a bad word at my house!  They have cultured her bodily fluids, checked her ears, checked her throat, checked her mouth, and checked her nose.  They come up with nothing.  It's extremely frustrating. 

I spoke with her nurses on the PICU yesterday afternoon and again in the evening.  They said she's just really warm from the fever and tired.  They think she was just wiped out from not feeling well and those dumb seizures take a lot of her strength.  Especially when she destats and needs help to start breathing again.

They spent yesterday basically getting her settled in and all of her meds and feedings organized.  I can't wait to get down there.  I want to see what they have to say and what their plans are for her shunt tubing, etc.  Right now Ella's shunt tubing is draining the CSF fluid into a bag outside of her body.  A little over a month ago her stomach wasn't handling the shunt tubing and it wasn't absorping the CSF fluid like it should be.  Ella has a lot of scar tissue in her abdominal cavity from all the procedures she's had and she had a colostomy bag at one time.  Her incision on her tummy just wouldn't heal properly, one afternoon Dr. O was changing her dressing and checking on the incision he discovered that the shunt tubing was nearly poking out of her tummy where the incision opening was!  It had to come out right away............that is when they clipped the tubing to about her chest area and surgically sutured the tubing to come out of her chest and drain into the bag outside of her body. This is just temporary until they figure out where the best place to put the shunt tubing will be, so it works effectively.  It clearly isn't working in her abdominal cavity.  This was sort of when the transfer to The Children's Hospital was decided.

Raymond and I are taking off tonight to be with her, Joe is going to stay here in Rapid.  When I spoke with them yesterday they stated anyone under 3 years old isn't allowed in the PICU.  I understand they have to look out for all the children on their floor.  Instead of Raymond and I taking turns going to visit in Ella's room our awesome friends Penny and Trista are going to let Joe sleep over tonight, and then he is spending the next 2 days and 2 nights snuggling with his Grandma Jody and Uncle Darren.  I'm sure Grandma Coe and Grandma Sharon will sneak some cuddles in too!  Thanks..... you guys are lifesavers!!!!  It will nice for Raymond and I to speak to the medical staff together too!

Well that was yesterday in a nutshell!  We will see how the rest of the week goes. 

I don't know who works in Bismarck's NICU this weekend but I plan on calling Saturday to update everyone :)