Today was much the same as yesterday. We were hopeful that Riley would come off the vent but, she's just not ready. Logan was able to visit today and go on a lunch date with mommy and daddy while the grandparents watched over Riley. Riley was able to breathe on her own which is fantastic news! She's moving more, annoyed with the vent and started to move her tongue around like she's done before all this happened feeling her new tooth. All in all she's progressing. I'm here at the hospital and looking forward to my night with Miss Riley. It's generally quieter at night and I like being able to talk to her, rub her feet and collect my thoughts.
And I couldn't leave Mason out! Leaving this face tonight was HARD! He's hanging out with Grandma Marie and loving every moment though!
Dave, daddy, wrote today's post. I don't believe he's given himself enough credit for the pillar of strength he's been for me and our extended family. I hope you enjoy his words.....
First thing is without my beautiful amazing wife I would be an utter mess in life right now. She is the conductor of an orchestra of Dr’s, Nurses, children, family, taxi schedule and my support and as always, my filter!
Riley opened her eyes tonight, for about 5 minutes straight. I couldn’t have been more excited…but it was 130 am and I was alone. I tried to call Megan but no answer, probably best, she would have completely freaked out until I could tell her what happened. We are just keeping it as a daddy daughter moment.
She moves her legs, wiggles her feet and toes and it appears her movements creep up her body a little more everyday. I dream of the day she can put her arms around my neck for a giant hug. She yawned last night, gagged and actually cried(the cry face and tears as the ventilator doesn’t allow for sound) last night after the Respiratory Therapist finished her treatment. All a list of “firsts” that I took for granted the first time around.
She continues to open her eyes, they are trying to wake her now. They are lowering her dose of the phenobarbital to once a day which will allow her more unmedicated hours to wake up. She appears to be trying very hard to wake up herself, so much so that they have put baby arm restraints on her to prevent her from removing her breathing tube when no one is looking. Her lung has inflated, and she is coughing and gagging on the tube(all good signs). They were planning on removing her breathing tube so they shut down the respirator for about 4 hours. She breathes just fine on her own but the attending physician would like to see her a little more awake before removing it. We will have to wait and see tomorrow, we will just consider this a test drive and some exercise for her lungs. The majority of her swelling is down and she looks like her normal cute self. So as we have been hoping for, more daily improvement, I am happy.
We have been here for 9 days, the majority of my time has been awake, holding Riley’s hand, tickling her feet, brushing her hair, praying and what I thought was a sure fire way to wake her from a coma…singing. The child life people brought a music player, so I play her lots of music. The problem with the first music player was one of the songs, and I do not know the name, is the song you hear at every wedding before the bride walks down the aisle. Every time that song came on so did my tears. So we now have a CD player with some nice piano music that keeps her calm. When I do sleep, the nurses make fun of me because of my “snoring” issue. I am told that I do not need a sleep study, all of the medical professional’s on the 6th floor agree, I need a CPAP machine.
We have fun with the nurses, some have nick names. One nurse is affectionately known as “slacker” after she got held up in another room and failed to show up and help out with Riley. I explained to her that there is a price to pay if you miss something in the Riley Hopper room. These people really do gods work and deserve to be treated with the utmost respect. They really like sugar, so the cookies Angela brought have been enjoyed. We brought some coffee crumble cake bites and even some Cinnabon and everything is really appreciated along with the smiles, thank you’s and jokes that we share with them, although not all of them have the greatest sense of humor but we still try.
I have walked every foot of this hospital during MRI’s, CT scans, X-rays or waiting for Megan to return from taking care of the boys too scared to return to the room because I didn’t want to get bad news by myself. On my walks at all hours of the night, I run into other dads that are going through something similar, same dazed look, same cold coffee that you forget to drink and obviously not caring about how we are dressed. We don’t exchange stories just a simple “good luck and god bless”. Depending on which floor they get on the elevator you kind of get an idea of what is wrong with their child. We all share the same pain, a father not able to protect their child from everything. We all know we can’t but that feeling is still there.
I am a changed man. I believe in the power of prayer, I believe that miracles happen and I believe that more than one has happened here.
On the first or second night, a Dr. told me that my Daughters brain was sludge and “if” she survived her chances at any semblance of a life were next to impossible. I had to call Megan and tell her this. The worst thing I have ever done in my life. The next day, a new team of doctors from Hematology came in and explained that what I was told the night before was not correct and that she had swelling and not “sludge” and there was hope. If that’s not a miracle I don’t know what one is then.
I have always told Megan that there are things that affect our lives and then there are things that are background noise. This experience has opened my eyes to the fact that some things that I considered background noise should be affecting my life more. I am truly humbled by the love, support, prayers and well wishes from so many for my little girl. As I said, I am a changed man.
Thank you all for everything
Dave, Megan, Logan, Mason and Super Riley