H-O-M-E

Well, this novel of Audra's current Medical Mystery is done. 

Not that I think there won't be a sequel !! 

 

After 19 days in the hospital is was time to go home. 

Both of the major medical concerns that she developed after she was admitted seem to have settled out...vomiting and hypertension.

 

We have her on lower volume tube feeds than she was on before and the clonidine patch is keeping her blood pressure stable.

 

She came home on a bunch of new meds,

and even I--the seasoned nurse--felt a teeny bit overwhelmed tonight while trying to get everything organized and on a schedule.

We will figure it out though, and get into a new routine.

 

The most frustrating part is that even though we spent 19 days in the hospital we didn't get the opportunity to address the issue that brought her to the ER in the first place...

her behavior.

 

Because she spent most of the 19 days in the hospital feeling crummy from nausea, vomiting and hypertension she wasn't having any of the behavior problems.  We are thinking that maybe her increased challenging behaviors were a result of one of these medical issues that we didn't even know was brewing.  So now we are hoping that those behaviors just never return.  And if they do...I guess we start back a square one for that.

 

A few good things did come out of this long hospital stay...

 

We received her Genetic diagnosis of ZTTK syndrome

 

We were able to see and consult with nearly all of her specialists

 

She was approved for increased home nursing care hours,

now 8 hours Monday-Friday.

 

The nursing agency we currently use is working on finding new nurses for these shifts and I have also been in contact with a few other nursing agencies to see if they can help cover some of the shifts.  I am hopeful that we will have more consistent nursing care at home for Audra very soon!

 

So now it's time to get back into the routine of home life, work and school.

Plus lots and lots of follow up appointments for Audra!

 

Packed and ready to leave the hospital...

Audra, Mommy and Mickey...homeward bound!

 

 Asleep after just a few minutes in the car...



 

 HOME !!!

 

We got home just before the other kids started getting home from school.

First one home was Riley...

 

 Then Aidan...

 

 And finally Maura...

 

Everyone was so excited to see each other!

The smiles were huge

and the hugs were tight.