Tuesday, April 23, 2013

Home Sweet Home Take 2

There are definitely some things in life I'd rather never ever re live.  The trip to the ER and subsequent transfer to CHOC back on 12/27/12 is one of those things.

Last Friday felt like deja vu and even the nurse helping care for Riley commented that it felt that way as well.  Once they sent the ambulance to pick Riley up from the ER it was like living in a dream.  We were given another terrible diagnosis, one that had our minds spinning again and we were back to wondering why Riley?  It just all seemed so unfair.
The nurse C, who had also been with Riley in December in the ER, never left her side the entire time we were there.  She remembered Riley immediately and really helped to calm us down.  While Dave ran back to the house to drop off Riley's home health nurse, C and I chatted.

Turns out C's sister had bacterial meningitis 30 years ago when they still lived in Guatemala.  Much like Dr. Doom who told us Riley was gone, C's mom had a doctor tell her the the same thing.  Her sister recovered, it took her many years, and is now a LVN and personal trainer.  I feel like people like C are placed in our lives at the right time to remind us that the hope, faith and belief we have in our daughter is real.  She kept telling me over and over "it's going to be okay mom, Riley's going to be okay."  It was comforting in the midst of extreme angst.

We came home Sunday and everyone was thrilled to have Riley back home.  The boys really missed having their sister at home.  We don't really have an actual diagnosis.  She still has some fluid in her brain and brain stem but, that is most likely leftover from the initial trauma Riley suffered back at the beginning of her illness. 

Riley continued to vomit her feeds until Saturday night when the nurse and resident decided to switch her back to the pump feed vs. bolus.  Hopefully, it works.  When we got home Sunday and I did another bolus feed, because we were waiting for the pump delivery, Riley vomited within minutes of me starting.  She lost 1+ pounds in the hospital so we really want her to keep the feeds down!  After talking with the doctors and nurses it's very evident that we will need to proceed with the fundoplication procedure.  We're hoping to get this on the calendar in the next week or so.  It will mean another short stay at CHOC but, it will also hopefully mean Riley's GI issues will be minimized.  Our belief from the beginning has been that Riley NEEDS her nutrition in order to help her brain heal.  There just is no other option.

The doctors and nurses were all very encouraging.  Riley is a totally different baby since her discharge and it was nice that others noticed as well.  As much as we love the PICU staff I can honestly tell you we never want to have to be on that floor as inpatients again.  The memories of why we were there in the first place are very raw and as one nurse put it I think we all were feeling a bit of PTSD this weekend, especially Riley.

Once we got home we were on our own for a few hours before nursing care started again.  We survived, although it was stressful.  Thankfully, Uncle Scott and Drew were able to spend the morning with the boys so we could bring Riley home without the added distraction of the crazy duo! Grandpa and Grandma Hopper came by to see Miss Riley Sunday afternoon.  Pa Doug and Grammie came over as well and Grammie stayed the night as Dave had a red eye to Florida Sunday night.
This week we have an appointment with Riley's pulmonologist and we're hoping to start to discuss decanulation or at least the process at the appointment.  We'll follow up with Dr. Irwin in her office next Tuesday and discuss adjusting Riley's meds more in detail.  One reason the doctors think Riley's heart rate was dropping is that she needs a new baseline as far as meds are concerned.  It's possible that her heart rate was dropping because of this.  We'll see. 

Now that we are back home we're back to settling in to our new normal, again.....  Yesterday, I took Logan to get fitted for his tuxedo for Leane's wedding in May. We had a lunch date as well.  I know Logan has missed these special times with me and hearing him tell me that he had the best morning with me was really nice.  I can't wait to see him all dressed up in his tux.  He's worried about wearing a "comberbun" as he calls it but, I think he'll love it once he sees what it actually is.
Uncle Brad was in town on a business trip yesterday and was able to come over for dinner and spend some time with us.  It was a nice evening and I know I've said it before but, I'm really looking forward to my brother, SIL, niece and new nephew moving back here in a few months.  We missed Kara and Molly but, really enjoyed having Uncle Brad around!

 Last week, before the chaos of the weekend, Rochelle and Chris stopped by with more food and Chris was able to hold Riley.  It's so nice being able to have visitors in our own home! We've been enjoying the meals sent by Sharon Briffett as well and we've even gotten Logan to try some new things for dinner thanks to all of the wonderful food! 

Thanks again for all of your support.  As soon as I asked for thoughts and prayers you all went to work and we truly felt the love and support for Riley and our family.  Riley is so blessed to have so many people that care about her.

The nursing coordinator from Riley's home health company told me yesterday that with patients like Riley once you see huge improvement there is always a setback. This last weekend definitely felt that way.  I hope that now that we have that out of the way it means Riley will continue back on the road to recovery.  It's like we go 10 steps forward and 5 steps back over and over again.

Fight on!
Dave, Megan, Logan, Mason and Courageous Riley

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