Riley has now been in a hospital for 90 days. The 27th of every month sneaks up on me and then I realize what day it is and the memories of the first few days at CHOC flood back all over again. Today it led me to go back and look at pictures from those first few days and I realized just how far Riley has come. Perhaps a gentle reminder to me (us) how much can happen in 90 days.
It's been a startling date because then I wake up the next morning and realize the babies are now another month older. Another reminder of how far we've come.
We've gone through New Year's, Valentine's Day, St. Patrick's Day and birthdays. We'll spend one last holiday, Easter in a hospital. Logan just wants to make sure the bunny knows where to find Riley.
Riley has been doing ok. Good and bad days like always. She is coming back to us though each day. When she looks at us she sees us. When she makes eye contact she connecting. She's starting to actually look all around consistently and will look to the right now as well. We just hope this continues. She's more mad now but, that's to be expected especially for a TBI patient. She can't verbalize her frustrations like an adult would so she just gets mad!
We're in get ready to bring Riley home mode and we couldn't be more nervous yet, excited. As long as everything falls in to place, and I hope it does, we believe with all of our heart that Riley will do even better at home and that we will all emotionally do better.
There are days, like today, where I don't even see Dave and we only update each other via phone/text. And days where we literally still just pass in the parking lot or share a quick lunch together in the common eating area here at Healthbridge and it's hard. It's the part that you do because you have to but, also the part that can really get to you if you think about it too long.
We were able to spend the night away on Sunday and it was needed. My mom stayed with the boys and Grandpa Hopper stayed with Riley. We were able to spend Monday morning together having breakfast and returned to Healthbridge around noon to relieve a tired Grandpa!
Monday afternoon the delivery of all of Riley's medical equipment and education on how to use it began. I'd say that is the day when Riley coming home really got "real". Logan is very curious about the O2 tanks at home and Mason has already tried to pull the plug out of the O2 generator. So.... mommy hit up Amazon and a collection of baby gates, plug covers and monitors will be at our house by the end of the week. I've also been looking for ideas of things we can use around the house for Riley to "hang out" in. Unlike a newborn who has 1000's of options a child Riley's age is pretty limited. So far I have a bean bag chair on my list but, if you have any ideas we'd love them!
Riley's new car seat arrived this morning and it is waiting in her room to be looked at in case it needs to be outfitted in any way. We were going back and forth on keeping her in her infant seat a little bit longer or moving her to a convertible. We figured while we have the expertise of the staff here at Healthbridge to help us configure her car seat it was best to go with something that she can use for a longer period of time. Most of our car seats are a gender neutral black but, once I saw this pattern online yesterday I knew Riley had to have it!
I got home yesterday in time to relieve my mom so she could get down to Del Mar to see my niece Molly and SIL. My brother flies in tonight and they'll be here through the weekend. We're all looking forward to seeing them and my SIL's growing belly! Our new nephew will be here sometime in early June. Logan is looking the most forward to a trip to Chuck E Cheese with Molly on Friday. He's talked about it for months!
I took Mason with me on a quick trip to Target to pick up bunny supplies yesterday. I figured he'd keep the secret from Logan on who really does the shopping! It was so odd being in Target without all 3of the kids. Solo trips have become the norm but, I usually don't just have one kid with me. Brought back many memories of when Logan was Mason's age.
We picked Logan up from school and we were home not 2 minutes when my crazy child face planted in to our kitchen rug. Mason is learning to walk. Has taken two steps here and there on his own. He uses anything to walk around the house. Stools, chairs and toys. The particular toy he was using slipped out from under him and he landed just right on the rug. Of course, he does this two days before we plan to see the bunny and right before Easter :(. He is our tough one though and I am scared that he is going to be the fearless boy on the playground. As it is now he slides face first down two steps in our hallway over and over and laughs and laughs!
These boys may end up giving me more grey hairs then Riley already has!
I looked around the house yesterday and started to freak out about everything that needs to be done. Our dryer broke last week and after I went to Home Depot with the boys and realized they don't install gas dryers in garages anymore, I decided to just have it repaired. We just don't have time to do any extra projects ourselves. So the repairman comes on Friday and I couldn't be happier. Our house has looked like this for the last week and the piles of laundry to be done just keep growing.
Saturday, we'll have a purging/organizing party and hopefully be ready for Riley's homecoming next Wednesday. We still have Christmas decorations waiting to go in the attic and Christmas gifts that need to be given. I need it done though and the piles of mail sorted and over flowing playroom organized or else I will go crazy. Those that know me well know how I'm not the most organized person on the planet so my desire to have these things done now is just odd to me. I suppose it's the one thing I know we can actually do and know what the outcome will be so it makes me feel better.
Today I took Mason with me and we went to the Easter egg hunt at Logan's school. Of course, his teachers were wearing their Team Riley shirts, as it's Wednesday, and it was a reminder of how many people are praying for and thinking of Riley and our family. Those little reminders help... a lot!
It was fun to see all of Logan's friends and watch them run wild on the playground gathering up eggs. Afterwards, they did a page of work before they were going to have a little party and Veggie Tales Easter movie. We had to leave early though because I needed to meet Hannah back at our house with the boys and get back down to Healthbridge to relieve Grandpa. Now I need to find the movie for Logan! It's all he talked about driving home!
Dave actually had a job going today and needed to be there so we were happy Grandpa could help us out. When I say our life has been put on hold for the last 90 days it really has! I think it was good for Dave to get back out in the field doing something!
They're planning on adjusting a few of Riley's medications in hopes that she won't need so many in the long run and once we're home. I'm very nervous that this won't all be figured out in a week.
Thankfully, after a discussion with the nurse and his phone call to Dr. Irwin they only upped her valium a little instead of messing with her baclofen. At first the rounding doctor wanted to double her dose of baclofen and believe me if they'd done that she would have been out of it 24/7. It's tough to find the balance between keeping Riley awake and comfortable and over medicating her to the point that she can't progress.
Thankfully, Dr. Irwin, Dave and myself see eye to eye in this regard and we always ask them to consult her before adjusting anything. Being the advocate for your child, telling different people the same thing over and over can really get frustrating. It's also stressful when you just want to make sure you are making the right decisions. The last thing I want is Riley to be stressed out or agitated but, when I see her trend towards toning and agitation right after feeds and right before she is gassy I'm not going to allow you to up a medication that will in turn relax her so much that when she's not having these episodes she can't function. Really I need a notebook to start documenting each day here so we have a good reference when we are home trying to decide what to do for her!
So thank you to all of you for being on this journey with us the last 90 days as we've navigated hospitals, surgeries, nurses, therapists, medical decisions and the ups and downs of hospital life. I will hopefully squeeze in a post or two before next Wednesday but, if I don't get the chance I wanted to make sure I said thanks!
I get teary thinking about how people have come together from ALL aspects our life, near and far to help us get through the last 3 months. It's a journey I don't wish on anyone EVER but, if we had to take this journey I'm happy we're not doing it alone.
I've reconnected with people I haven't really spoken to in years, learned about remarkable stories of recovery and triumph from emails and messages you have all sent me. And we've been carried through this nightmare thanks to all of you.
We've met young individuals at Healthbridge that have inspired us to push Riley even farther. We've watched a handful go home and cheered them on as they did.
We've met doctors, nurses, cna's, rt's and therapists that have held our hands through the toughest days and have helped us to make the most difficult decisions while under tons of stress. We've shared tears, happy stories, inspiring stories and learned about their families as they've taken the time to learn about ours. Each of these people has touched us in one way or another. Until you are in the trenches so to speak I don't think you can ever fully understand what the person who takes care of your loved one or friend deals with while on the job. They are all angels and all deserve to be thanked every once and a while (if not daily) for the work they do each day.
This next step is going to be scary and one we hope happens as smoothly as possible. I remember how nervous we were to leave CHOC and how it all worked out. So, we'll cautiously take this next step and hope for the best.
So thank you! Thanks for your continued support. We hope once she's settled we can take Riley out and about to do normal things with us. We also hope to be able to educate people on Riley's extra accessories (trach/gtube) and I pray I can deal with all of the questions and perhaps stares that will come along with it all. She's still our little baby girl and we just want what is best for her and for Riley to live the life here that she was intended to. Hopefully, the decisions we've made so far are giving her the tools she needs to get there.
Riley still needs ALL the prayers, thoughts and good wishes she can get. We're on a road and journey that has only just begun.....
Dave, Megan, Logan, Mason and Courageous Riley