We've learned that there are certain nurses/doctors who make things happen and others who seem almost paralyzed with how to problem solve and get things done. Thankfully, Monday we had A, a wonderful, amazing nurse who listened again to our request for a cooler room and made the switch happen. We were lucky to have A the last two days and she has really helped me through this stage in Riley's recovery. Explaining what is going on, reassuring me that it is ok to give her certain medicines to calm her and telling me that this will all just be part of Riley's story. A is also a hospice nurse and I told her she must be an angel to deal with two very stressful jobs. Her interactions with the children here are just wonderful to watch. You can tell that they just adore her and that she is one of the special ones. I know that if we need anything done or help figuring something out she'll be the one to turn to.
Now that we've been here for about 2 1/2 weeks we're starting to really know the staff and residents. As hard as the ICU was from a life/death standpoint, this facility can be difficult to be around for long periods of time as well. You see the care and love being given but, can tell the patients who may not get to go home or don't have that as an option and it can be sad. I try not to think about it and we've become cheerleaders for a few of the patients that have befriended us. We've watched one little boy "G" he couldn't get out of his wheelchair when we first got here. Now he is walking down the hallway without the assistance of his wheelchair and just a reasurring therapists hand behind him. Everyday I tell him what a good job he is doing and everyday he smiles and says thanks.
There is also "B". The social butterfly around here. She always has a bright smile and is getting all of the other kids to join her in a game of Wii in the hallway. Then there is our neighbor who rocks out to his music at 6pm every single night. He enjoys each beat and his enjoyment can be heard all the way down the hall.
These children have really taught us that no matter what you face, no matter what your disability you can make a choice to enjoy each moment or not. They take advantage of every opportunity given to them and make the best of their situations. I look forward to seeing them each and every day and love that they like to check in on Riley and remind us how far they've each come individually and how far Riley will go.
We finally saw the GI doctor today! Initially, when they tried to get us an appointment over at the CHOC clinics we weren't going to be able to get in until 2/27. So we said we'd see anyone over there not just the doctor that did Riley's gtube placement. After our roundtable meeting yesterday we were told that one of the doctors would actually come by here to see Riley! What a freaking relief. No ambulance transport, no special RT needed and no waiting around an office to be seen. Dr. Katz just left and has a few ideas to help Riley out.
First, he doesn't think it's a formula issue. She's on the same formula she's always been on. They just started prevacid a few days ago and he wants them to split up her dose. Children metabolize medicine much faster then adults so he thinks that will help. He is also going to add a small dose of azithromycin to help get things going in her tummy. One of her medications, baclofen, can cause things to slow down in the intestines so hopefully this will help. He was very positive adding that as she gets better and is more mobile most of these medications can be stopped. Of course the surgery possibility is still there but, it will be the last course to take if these things don't help.
Riley is also going to start on valium, again a small dose, twice a day. Riley is more alert and aware of her surroundings right now. She is moving her limbs with purpose but, she is also agitated as realizes she can't do what she wants. I can't even imagine what she is feeling. We put a toy in front of her and even though she wants to play her brain doesn't connect to tell her how to play. It's amazing what we take for granted on a day to day basis. The valium will help keep her relaxed and yet, awake. She'll still have ativan available for her when needed.
Riley's nuero rehab doctor has been fantastic with working on her meds and trying to find the right balance to help Riley be comfortable but, also allow her to be a participant in therapies and be more alert in general. She is just coming to Healthbridge and CHOC from Loma Linda and is still in a transitional period. Knowing she is calling the shots on her meds and adjusting them as needed is a relief. We hit the jackpot when it came to doctors for this stage of Riley's care. She's also a mom with 3 young kids so we connect and she listens to what we have to say about Riley.
As far as therapies Riley is doing great. Participating more and more each day. Over the weekend we were both pretty down and Monday Riley showed that she could/would particpate in her therapies and was the most awake she'd been since this all happened. It's like she knew mommy and daddy needed a good day from her.
We're in the middle of forming a plan for Riley's homecoming. It will be a specific date regardless of where she is recovery wise so we have to put a ton of pieces together to make it all happen. Hopefully, given the timeframe we are working with Riley will have made big progress and we won't need as much help as we are planning for but, realistically we will.
It's so hard day in and day out for us to concentrate on getting anything done. We have so much that needs to be done and yet, Riley things or time with the boys just seem to overtake our days. We both yearn for the boring normalcy that we had before this all happened. Planning our weeks in advance and trying to balance all of the meetings and phone calls that come with Riley's illness and recovery are overwhelming at times. My stack of insurance paperwork and bills seems to be growing by the minute. Oh well. With time it will get done.
Prayers are being answered and Riley is still making the progress she needs to. Tonight, while with daddy, Riley has been awake, alert and looking all over the room. I hope this continues. All we can do is make sure she knows we are there for her and that she is fighting hard for a reason. Beyond that it is up to Riley. Thankfully, she is our feisty girl who won't give up!
Until next time we stay faithful, hopeful and believe in our little girl.
Fight on!
Love,
Dave, Megan, Logan, Mason and Courageous Riley!
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