Monday, January 7, 2013

One step forward and two steps back.....

Sorry for the lack of update last night. I was exhausted. Dave left around 545 and I came back up to the room and fell asleep in the chair next to Riley while we were watching Baby Einstein. At some point my foot fell off the wall it was resting on and I ended up taking a nap on the bed until about 930. After that I just went to bed!

As of this morning we have a minor setback. Riley has RSV. It makes sense now why when she came off the vent she had so many secreations and had to have her boogies and saliva sucked so often. Around 10 last night she had a temperature of 102 and was given Tylenol. The doctors decided to do a blood/urine sample and sure enough when I got up at 530 this morning our nurse was gowned/masked and I knew something had come back. Good news is she is already on the high flow oxygen and was already receiving breathing treatments. She's much better this morning and her flow on her oxygen has been lowered twice. All steps to get her off of the oxygen completely. We're asking that we don't have any visitors except immediate family at this time. I had to tell Dave that we really shouldn't bring Logan today and it broke my heart. That little boy misses his sister and I know was looking forward to seeing her but, he won't wear a mask no matter how many times I've tried to get him to and we just can't risk Riley's health and recovery at this point or Logan and Mason's!

Yesterday was Day 11. Right after the attending from yesterday did rounds and commented that he'd like Riley "more awake" she showed him and was awake for 2 to 3 hour stretches with her eyes open looking at us. She yawned a bunch yesterday and at one point when I was sitting talking to Riley with my SIL Becky she yawned and made a sound. She proceeded to do it again about 20 minutes later and it was the best sound I had heard all day.

Riley's left eye had been super lazy/tracking to the left. Consistent with her type of brain injury. Yesterday, it made tons of progress pulling more to the center and her pupil began to focus more. Even the nuero noticed this and many other differences and Riley again took some baby steps on her way to recovery. We were told we might be moved to a regular floor, a step closer to going home! My biggest concern is the lack of private rooms and not as much one on one care from the nurses. Only time will tell when we move to that floor but, I've told anyone and everyone that if a private room is available we'd really like it. I'm sure Dave's snoring would be motivation enough for them to put us in a private room :)

We really have to continually remind ourselves to stay positive for Riley. Sometimes, it is hard. There is only so much we can do from a mom/dad standpoint and not being able to make my baby all better is killing me inside. We know there wasn't anything we could have done to prevent this but, it is so hard to feel like our job to protect Riley and our boys from an y harm has failed a little. When we get to feeling this way we usually take a walk and snap out of it as Dave says. We don't need Riley feeling any of our negative energy and only want her to pull from our strength and positivity.

We had many visitors yesterday. Rochelle and Chris. Joanna and Mark. Grammie and Pa Doug. Grandma and Grandad. Uncle Scott and Aunt Becky. Angela and Mrs T :). Mike Frasco and his wife Kristen (who brought Riley the softest blanket I've ever felt),Jen Jen and Casey (who also watched the boys for a few hours and brought me chips and salsa from one of my favorite restaurants, Logan's wondering why Casey has to work today as he played any game Logan wanted). Every single visit is so special and so needed. One of the sweetest and most emotional visits today was from Hannah (Mason & Riley's part time nanny) and her mom Shannon.

A few months ago, by happen chance, I was in the cafeteria at Methodist in Arcadia, meeting with a client. Logan was with me as I believe he had a doctor appt that day. We ran in to Shannon and Hannah having lunch. At the time we were looking for a new part time nanny as our old one was leaving to go to college in Utah. We continued talking and Hannah's class sschedule coinceded perfectly with the schedule we needed. She stopped by to visit Mason and Riley and I think I asked her to start then and there. It's been a blessing to have such a caring, attentive caregiver for our babies
and little Miss Riley has Hannah wrapped around her finger! What amazed us was Riley's reaction to Hannah's voice. She definitely knew who she was and opened her eyes for her. I'm surprised we didn't all burst in to tears when it happened.

So with RSV, we may stay here on the PICU floor longer than anticipated. PT/OT will start today and we continue to stay by Riley's side, talking to her, touching her, participating in more of her care and telling her how strong and courageous she is.

Dave's been working on a surprise that should come to life today and we can't wait to share what it is.

Continued thank yous to all of you for all of your love and support. I'm short on time this AM but, we have some beautiful gifts that have been sent to Miss Riley to share tonight.

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

1 comment:

  1. We are continuously thinking about you all. Its unbelievable how strong you and your family are. Riley is adorable and will continue to fight because she has all of you by her side. Hoping Riley is better very, very soon. Thank you for taking the time for daily updates. Sending good thoughts your way all day everyday.
    Nicole and family