Monday, February 14, 2011

Discharged, Home, Four, and Love

Lots to catch up on.  I'll break it down.

Eli~ He was discharged after a HUGE mess on Saturday the 5th.  The hospital thought they had taken care of his blood thinners and we thought they hadn't.  Eli's nursing agency, DME, and pharmacy all requested a monday discharge.  The hospital said Saturday was fine.  Well it wasn't.  There were no meds.  We had to have them by 9pm.  After 4 hrs of calling around Bob and I were able to find a company in Wichita who had them.  So the docs had to do lots of changing in plans.  We were discharged and had to hurry back to Wichita to meet them for all of his meds.  His IV antibiotics ended up being 45 minutes later, and his blood thinners ended up being on time.  We had minimal nursing.  It was a mess trying to get resituated.  Bob and I were drained after being gone for almost 5 weeks.  It took us days to get unpacked, reorganized, and resituated with all of Eli's new routines.  Eli's had some rough patches but has done remarkably well getting resituated.  The new meds are time consuming.  Sleep is a mess.  We've been working on changing some things with his formula which has caused some GI issues.  This morning he had his 1st nose bleed.  So much he had to be suctioned as he choked on it and his drain bag was a mess.  He has TONS of appts coming up.  We will be in KC 2 days this week, 3 days next week, plus 1 overnight at our local hospital for his CPAP.  Alot of changes going on with his care plan and doctors and such. 

Ari~ She's doing well now.  She had pneumonia but she was the one who got better quickly. She had her 4th birthday yesterday!!!  Such a big girl!  I can't believe that she's already 4.  Her birthday party is this coming weekend.  She wants a princess fairy mermaid halloween birthday!  :)  She's so silly.  She got 1 present yesterday, a purple crown with a crown necklace.  She loves it and it looks super pretty on her!  She's super excited for her upcoming party and cake!

Ben~ He's a mess currently.  He got super sick.  Ended up with 103 to 104 fever and croupy cough.  He was exhausted and didn't eat and had to be pushed to drink.  He missed all last week of school.  He's doing fine now and is back at school and all good.  We will have his IEP meeting this coming friday.  Today is his valentine's party and he's super excited about that!

Jace~ He's Jace.  Lol.  He's been a mess lately.  His behavior has been horrible and the violent side has shown back up some.  He is finally better as well.  He ran alot of fevers and his cough was horrible.  Big deep coughing.  He also missed alot of school.  He's doing well with school and has really been improving with some of his academics!  He also has his valentines party at school today.  His class is doing ice cream sundae's and for the 1st time he gets to participate.  Our local grocery store finally carries 3 different flavors of almond milk ice cream!

Emily~ She's also finally beter. Today was her 1st day back at school, missing all of last week as well.  Again the high fevers and cough, and it really caused her asthma to flair up.  She is preparing for her upcoming tests at school this week and will spend 3 days on them.  Bob has spent alot of time helping her go thru all of the test preparations and she is definitely ready!

Bob and I are exhausted.  He's still on disability leave and it has definitely been helpful to have him home right now as we are all getting resituated.  He has his next doctors check up on the 5th of March.  Hopefully the changes in meds and such will help!  I'm ok.  Alot of thinking and adjusting right now.  During these last 6 weeks we have learned alot about ourselves, our family, friends, the medical system, and life as a whole!

I promise to try to do better about updating more often.  These last 10 days we've just needed this time away from the computer to be a family!  It's been nice!

In closing!  HAPPY VALENTINES DAY!!!!

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