Home Sweet Home! Finally!

 

 

The last few days have been emotional for so many reasons. 

When we made the decision to go to Healthbridge after Riley's discharge from CHOC we hoped that it truly would be the "bridge" we needed before ultimately bringing Riley home.  And it was.  The staff, residents and community were definitely something we all needed.  It took a few days to get adjusted to but, once we were all settled it really worked out for our family.  We're thankful we were able to spend the time we did at Healthbridge. 

Riley had the most amazing nurses, therapists and doctors.  Of course there are always a few people that you don't mesh with or don't work out but, overall everyone was fabulous.  As we got closer to Riley's discharge date the goodbyes started and the tears and hugs were plentiful!  When you spend so many hours a day with someone and they are taking care of your child you tend to develop a relationship with them.  The way they personally cared about Riley was something that  we knew existed but was only really expressed those last few days.  I suppose most of that is due in part to the nature of the job but, it was amazing to see the genuine care and concern that all of these individuals have for our little girl.  Even Dave got a bit choked up and had to cut a few conversations short the last couple of days.  It was hard to say goodbye!

***A few thank you gifts for the wonderful people that took care of Miss Riley

We watched many patients leave Healthbridge to go home and always wondered about the day we would head home.  A, one of the many patients we  met went home a week or so ago.  She's been coming back for outpatient therapy and I was able to snap a pic on our way out with her.  For someone who has been through so much herself she was always encouraging and always telling us that it will take time but, Riley can do it.  We'll miss seeing patients like her everyday.

***All buckled in and ready for her ride HOME!

We had so much stuff to bring home.  Clothes, toys, blankets and medical supplies.... Tons of medical supplies.  We tried to arrange the room as best we could before we got home but, we knew there was no way to tell how it would all work out.  Thankfully, the nurses have been really good about getting everything organized.  I know it helps them to know where everything is and they've been in a home setting before caring for similar patients so they know what does/doesn't work!

Wednesday we took Riley to her GI appointment on our own.  Due to a mix up regarding how Riley was going to get to and from the appointment we had no other option then to take her by private vehicle.  It ended up working out okay and we survived our first trip with Riley without any hiccups.  We met with the doctor  who originally placed Riley's Gtube.  She went over Riley's ph probe study and as we expected Riley has a pretty bad case of reflux.  We'll be meeting with a surgeon sometime next week to discuss the fundoplication procedure/surgery.  It will be a laproscopic surgery and Riley will need to stay at CHOC for a couple of days.  We were very hesitant about putting Riley through any other surgeries but, we've tried different methods of feeding her, different medications and nothing is really working.  Getting Riley comfortable and well fed is our number one concern and we believe this will ultimately be the best option for her and aide in her recovery process in general.

***Thankfully, we have a double stroller!  This is how we had to travel to Riley's doctor appointment and all the stuff we had to bring with us!

Wednesday night the boys stayed with Grammie and Pa Doug and Jen Jen came over to help me get Riley's room really ready.  We were able to get a ton done and it made bringing Riley home much easier.

We had no idea what to expect when we got home.  I mean, I've never had a mini hospital room in my house before and quite frankly the thought of having "strangers" in your home while you are trying to live your normal life takes some getting used to.  Thankfully, we'll have some continuity with care.  I think it will be good for Riley and for our family.  Logan keeps asking me what the nurses name is and checks on them a million times a day. 

We hope that over the next few days we all are settled in and can get in to a good routine.  It will take time though I'm sure.  The adjustment has been overwhelming and Riley is doing okay but, definitely knows she is not in her room at Healthbridge anymore.  When we first got home on Thursday I walked in the front door with her and she opened her eyes to look around.  Riley knows she is home.  Right now, that is all that matters to us.  She's where she needs to be and the logistics of continuing her care at home will hopefully fall in to place.  With a 13 month old and almost 4 1/2 year old who have been used to us all living apart for so long things are a bit chaotic.  We hope by Monday we're all adjusted and that Riley calms down a bit once she gets to know her nurses and our new routine takes shape.

Next week we'll jump in to a more normal schedule which will be filled with doctor appointments and therapy visits.  We're still figuring out the therapy end so while we wait to see where we end up going we're going to be working with Riley on our own.  We've gone back and forth on whether we want her therapies to be in home or outpatient at a facility.  Where we live is great for getting to many places in Southern California but, not necessarily close to what we need for Riley.  Due to the specialized type of illness Riley has had we really need to make sure we are getting her the right therapists who are familiar with a case like Riley's.  We're hoping a few facilities near us will be able to work with her.  If not we'll use Healthbridge on an outpatient basis for therapies.  While doing her therapies in home seemed to be ideal to us it doesn't seem to be what will be best for Riley.

***Logan modeling the hat that Hannah's aunt made!  We LOVE them!  Thank you Selena!***

Thank you for ALL of your support and my apologies for the delayed post.  Life has been quite hectic as we settle back in at home.  Thanks to my bff Erica we've had meals delivered and it's made it so much easier at night to not have to worry about what to make for dinner!  Thank you Erica!  Thank Jennifer!  Thank you Tia T & Uncle Mike! 

At the end of the day there really is no place like home and we are thrilled to all be together again as we continue to support Riley on this journey.

Fight On!
Love,
Dave, Megan, Logan, Mason and Courageous Riley