Riley underwent an upper GI procedure this morning to make sure she is ready for her GI tube placement. Feeds were stopped at 4am PST in order to complete this procedure. She was taken to the radiology department where they inserted dye to map her insides. The way they do the procedure is minimally invasive so they had to make sure she had enough room around her organs to do the procedure. When the attending this morning explained the procedure to the entire PICU team during rounds it was very fascinating. Nice thing is, barring any complications, she won't need to be opened up and will therefore run a lower risk of infection from the procedure. She'll still have a tube hanging out of her tummy for 4-6 weeks until they can place the button. Knowing she'll be getting the right nutrition is important to us as we know how vital that will be for her brain during recovery.
We also spoke with the trachesostomy nurse yesterday. She explained the procedure and device and left us with a video with further explanation. She made a comment about Riley living with the trach and not being defined by it, not being a "sick" child but, a child with a trach. This comment made us realize and appreciate the personal value she was taking in Riley and also the care in explaining to us what we were trying so hard to make a decision about. We had a normal little girl Christmas Day and yet, we are now faced with these life changing decisions for our little girl. Once placed will this ever come out? Will Riley ever swim, run on the beach or sleep at night without the mist required to moisten her esophagus? All signs point to yes. We've chosen to not look at the "what if's" and rather focus on the here and now.
As of today she is completely oxygen free! Riley is breathing completely on her own. We knew she could. It's just an amazing thing to see especially since 3 1/2 weeks ago she was on a vent and we didn't expect her to live.
So with all of that being said we've decided to proceed with the tracheostomy. A trach will allow her to manage her secretions, keep an open airway and work on healing her other parts of her body (brain) that need the most attention. We now feel confident that this will be something that we will be doing to give Riley the best chance at rehabilitating. We needed to take some time to get to this decision and I can say we are both now at peace with it.
We signed the consent for the surgery, went over the risks and complications and we are now waiting for the ENT team to hopefully coordinate with the Gastro team. The trach procedure will be done tomorrow at 12 or 1230.
Riley is still struggling during her awake times with muscle agitation and spasms. This morning though one of the resident's was in the room while one happened and reassured Dave that it is a good thing to see her moving all of her limbs and at one point almost rolling over. It is all part of the waking up process and finally having someone actually verbalize this to us was nice. When she sleeps she is so peaceful. It is hard to watch her struggle so much. She has an open order for Ativan so at night or during the day when we feel she's really struggling we have them give Riley the Ativan instead of the usual go to Tylenol.
Riley worked with speech therapy twice today. This afternoon she actually let the ST get in her mouth and feel around. She's currently cutting her second tooth so I'm just happy the speech therapist didn't lose a finger. Yesterday, when the ENT resident came by to check Riley out she bit her and the resident said with a straight face "oh no I'm a surgeon I need my hands". We've all had a bit of a chuckle out of that one. Perhaps it's because we've been cooped up in here too long or more because the reality is my almost 11 month did not intentionally try to ruin your surgeon hands :).
Riley demonstrated her gag reflex and strength in her mouth so now the next steps will be to stimulate those muscles even more to get her back to where she was as far as eating/swallowing. I know the ST was surprised at the difference in Riley since even last Friday so she's making improvements we can't visually see as well.
I've had a ton of questions and emails regarding Riley's therapy once we leave CHOC and where we'll end up. Hopefully, crossing our fingers, Riley will be able to be home with us and we can take her to daily intensive outpatient therapy. The therapists here believe that due to Riley's age; being at home, sleeping at home, bathing at home and even going in and out of the carseat and car for errands etc. are going to be factors that are just as important as the therapies themselves. We're still researching facilities so that we know what's available and we expect a transition period between here and home but, not an extended inpatient stay.
Once home we will need TONS of medical stuff. So much that I can't begin to list what it will all entail. We'll have the medical device truck drop off supplies to restock us each month and we will both be CPR retrained and trained extensively on how to care for Riley and her "luggage". Overwhelming but, having our family back together under one roof, even under such different circumstances is very important to all of us. We are going to need to find our new normal and adjust to what Riley's needs are but, we still need to focus on Logan and Mason who deserve our attention and care as well. Home health help will probably be in our future and as we get closer we'll be converting our den/spare bedroom for Riley.
Last night, I was at home and we finished packing up the shirts to mass mail. I dropped them off at our neighborhood pharmacy/post office this morning and they are on the way to all of you. If I missed you please email me again to let me know you want one. We still have quite a few left as I over ordered so we'd have some spares. We can't wait to see all of you sporting your Team Riley shirts. Hannah is going to kill me but, I stole this picture her mom put on facebook of her wearing her shirt. :)
It goes without saying but, without your continued support, messages and well wishes we'd be a mess. My brother made a comment to me last night on the phone about how we were staying so strong and how do we do it? I think in situations like this you don't have a choice. You have to make a choice to be strong, breakdown when needed, cry, vent scream but, at the end of the day still know that your only mission right now is getting what is best for your child and being the loudest and best advocate that you can be on their behalf. It's not easy and I know that without each other we'd be lost but, you just do it.
Dave, Megan, Logan, Mason and Courageous Riley!