Changes and big moves!

We made a big move Monday early evening to the step down PICU unit on the second floor! We still have a private room and the same nurses and doctors we've had the entire time we've been here. It happened very suddenly as we were notified late in the afternoon that we'd be moving and then we left the 6th floor around 6 pm. It was a very emotional move for me. Two of our favorite nurses were in the hallway as we left and just the goodbyes they gave Riley as we were leaving sent me in to tears. I think it is because we had been there for so long and room 621 had been our home away from home during the most critical time in Riley's life. We also had caregivers who were amazing. Nurses, respiratory therapists and others who really became the friendly faces we needed on a daily basis and who gave Riley outstanding/above and beyond care. We have a little surprise working for all of them so now we need to figure out how to pull it off.

Our new room is a little smaller, the unit is smaller and it is much quieter in general. It's also just been different and not the same warm feeling we had on the 6th floor.

Riley had a great day Monday. In the morning she was awake every 1-1 1/2 hours and she started moving her head and both eyes side to side depending on where we were. She was also less agitated and overall more alert. She scanned the room a ton which can only lead me to believe she was wondering where the heck we were! After her speech therapy she was alert and awake the majority of the afternoon.

We've now mastered suctioning Riley's trach and know what signs to look for that tell us it needs to be done. Grandpa Hopper even jumped in to practice on Saturday when he stayed with Riley for a few hours so we could have a date. We've started to administer her meds through her gtube and after her first trach change we'll practice doing that as well. We still need to take a CPR class specific to Riley and we're hoping to get our family members in to the class along with us so that everyone is comfortable helping with Riley.

Tuesday, Riley had her first trach change. Made me a tad squimish and I am going to let Dave do the first one today and I'll follow suit after. I helped change the velcro strap that holds the trach in place yesterday and really once you get the rhythm I don't think it will be too hard.

Riley couldn't start PT/OT again until the first trach change but, she was able to have speech/feeding therapy yesterday. Riley has the ability to swallow so they are working on getting her swallowing stronger as it is one of the first things to go after a TBI and one of the first to come back. The therapist told me that it is good she is swallowing as it is a brain stem function so it shows that she is following the road to rehab as she should as far as this aspect.
She used a muscle stimulation device on Riley's chin area while doing the therapy. It feels like a tingle and helps to work the muscles needed for swallowing. Riley got apple juice for the first time ever and a lemon lollipop during her therapy. Yesterday she tried to put a "passy" (I think that is the right term) over the trach to see how Riley did but, it appears she doesn't have a mature enough throat area for that attachment just yet. It could be due to her age or the swelling that still is in her throat area. The passy will allow Riley to use her voice which we can tell she is trying so hard to do. In fact during a coughing episode yesterday in the morning Dave could hear her voice trying to break through.

Monday was also our babies 11 month birthday! I can't believe in one month we will have two 1 year olds! It was a hard day for me as I left Mason in the morning and could only think about the party I had in mind for these two and the planning I should be doing. Our goal is to have Riley home by her 1st birthday so we can celebrate Mason & Riley together, as a family. Will this happen? Only time will tell.

We started feeling a bit out of sorts on the 2nd floor Tuesday. Even though we'd been told by one of the attending doctors that they were not kicking us out and to take our time making our decision about where to go next, we just both had a feeling from the nurses that they wanted us gone. So, Dave met with a rep from a facility called Healthbridge , located basically down the street, Tuesday afternoon in Riley's room. Thankfully, we were able to tour the facility yesterday and we'll be talking with the case manager this morning about moving Riley there. They have a bed available and the facility only has 25 beds total so it is smaller and offers everything we are looking for.

The facility is certified as a step down PICU facility and offers all the care that we get here in the hospital plus the bonus of PT/OT/ST that is more coordinated and scheduled. We honestly haven't felt much care has been given to Riley in this area, aside from ST the last couple of weeks. Granted they weren't allowed to work with her before the first trach change but, even after they have been scarce.

Last night, I returned from dinner to a situation with Riley that infuriated me to the point that I was ready to transfer in the middle of the night. It saddens me because up until the last couple of days all I could do was rave about the staff and care Riley had been getting. I actually left early for dinner last night because the day nurse made me feel pushed to making a decision about where we were going and even went as far as "telling" me if we didn't leave by Friday they'd move us again. It felt like a threat and I didn't want Riley to sense the tension so I left before she did. Really lady? Anyway, needless to say we are ready to move on!

One of Logan's biggest struggles has been that his family has been separated and he tells us it makes us all not a family when we are apart. We've tried to explain to him that we are a family no matter where we sleep or live and will always be one. I know how he feels though. We miss our lazy Sundays hanging out around the house together in our jammies and just being a family. The new facility fosters a family healing/rehab environment. Riley will be able to have visitors (YAY!) and we can actually bring both boys to see their sister and the 5 of us can spend the family time we all need together.

Once we pull the trigger, sometime this morning, the ball will be rolling to get Riley transferred. It's possible it could happen as early as this afternoon or possibly Friday. We've requested a hearing test for Riley before she transfers and they also have another set of labs to run.

After Riley arrives at her new residence she'll be assessed and we will be working with the team to form a game plan for Riley. She'll have a schedule, get to wear her clothes, take a bath at her normal bath time and she'll also be able to have set rehabilitation 6 days a week. It will start off slow and hopefully, with a couple days of adjustment Riley will feel more "at home" and we'll start the next chapter.

I feel bad for not updating but, things have happened rather quickly and the chaos the last few days has left little time to write.

Thanks again for everything! Once Riley is settled we'll let everyone know when she can have visitors again. We will be limiting visitors to immediate family at first as they have all been missing their Riley time and need, as much as Riley, some one on one time with one another before we overload Riley.

We feel this is the right decision for Riley and for our family. Going home was not something we felt was beneficial for Riley immediately and the place we've chosen will hopefully be the bridge we all need to ultimately get Riley home.

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