Thursday, January 3, 2013

Day 8... We wait and adjust to our new life

Riley had another pretty uneventful day in the sense that her vitals are all doing well and other then the issues with her lungs starting to need extra care she's doing pretty well. She has had to have albuterol to help loosen the junk in her lungs and constant visits from the respiratory therapists to make sure they keep her lungs from collapsing.
Good news on that front is that she is breathing over the respirator at a fairly steady rate so she may be able to come off of the vent in the next few days. The doctors want her to be more "awake" though and the phenobarbital she is getting makes it difficult for her little body to get to that state.

I mentioned the infectious disease doctor yesterday and we had a nice long visit with him today. They finally got the exact strain of meningitis back that Riley has, 15B. This basically means that what she has was not what she was vaccinated for. She also has encephalitis and sepsis. Poor girl has been hit with the trifecta of shitty illnesses.

From an infectious disease standpoint, they now need to figure out why her body was so vulnerable to 15B. When you are pregnant your baby receives your antibodies (mom's) in order to fend off these types of illnesses once they get outside the womb. It was explained to us that around the 8/9 month mark the antibodies I've passed on to Riley begin to diminish and her body then begins to produce it's own set.
The theory running around currently is that once my antibodies started diminishing Riley's body was not picking up the slack to make her own. Or she was in the wrong place at the wrong time and was exposed to 15B right at the point that her body was starting to make it's own and thus more vulnerable.

Last night, Dr. Arrieta (ID) gave Riley an infusion of hemoglobin to help sustain her for the immediate future. The hemoglobin that he gave her will slowly diminish decrease by 1/2 in 4 weeks and another 1/2 in another 4 weeks after that. Basically, he's protecting her and then will reevaluate in 4 weeks time to see how her own body is doing producing new antibodies as it was supposed to be doing. If her body doesn't start doing this we deal with another immune issue and at that point decide how to treat.

From a neurology standpoint Riley is still making slow progress. Moving her extremities more and more each day. It's so hard to know what her neurological outcome will be and also to know what we/they are dealing with because she is still on the phenobarbital and her brain still has swelling that is slowly coming down.

Until, those two things have occurred I feel the nuero team is waiting as much as we are. What we, as parents know for sure is that we see the baby step progress we were promised starting to happen.

Medically, I believe everyone is happy with her progress. We still need to draw patience from somewhere because time is going to be Riley's bff and best healer in the weeks to come.

I met with the social worker today. It was one of the few times I'd been alone and she took the time to come and chat with me. She was SO sweet! We talked a ton about how I was feeling/dealing and I always went back to how are we here and wow I just can't believe the support we have. We also touched on those we'd encounter at the hospital. Late last night I was near the vending machines and a dad struck up a conversation with me. Anyone that knows me personally knows I like to talk and perhaps I looked like I was in the mood and so we chatted. There are children with terminal diagnoses all around us. Most days I don't engage the other parents as I have no idea what their child is at CHOC for and it seems to be an unspoken parent rule that you don't ask. Anyway, he unloaded on me and I just didn't know what to do. I was kind and listened and tried to make my get away as fast as I could. Now, please don't think I didn't care. Any other day, when my child wasn't sitting on the 6th floor fighting for her life I would have bought his dinner and possibly a beer or two. Last night I didn't have the emotional energy to help him. The social worker helped me with that and when she left the room it was as if I had an on call therapist who made hospital room calls.

My amazing mom took Mason and Logan to doctors appts today. We needed the reassurance that our boys were ok health wise. They are and Mason gained 2 pounds in 4 weeks. I guess we all gain weight over the holidays. My dad and brother took my car for an oil change, new tires, car wash etc. My MIL Marie took great care of Mason and visited with us at the hospital. We have an AMAZING family. I think our families will be requesting a spreadsheet for the schedules I'm coming up with because once I make them I tend to forget who goes where and when.

We had visits from David/Cynthia (I've worked with them at Aflac for going on 9 years), Robin (my second cousin twice removed... kidding but, we're cousin I just can't give you the long story how we are), Robin's sweet brother Alex and Logan's preschool teacher Miss Erica. Yes, you read that right, Logan's preschool teacher who worked all day with the delightful 3,4 and 5 year olds and still had it in her to visit our sweet Riley. We're lucky to part of the Sonrise family and I am still in awe that she took the time to drive in the crappy LA traffic to visit.

I'm home tonight. My brother departs back to CT tomorrow which makes me sad but, his family will be back out here in March and I can't wait to take another cousin picture with Molly and my kiddos.
Dave's step dad will arrive tomorrow after winterizing their home in MT.
We will wake up to day 9 of this nightmare and float through the day like we do everyday.

Some funnies from the last few days that may make you all chuckle started with me running out of gas on the way home to see my boys and grab overnight clothes yesterday. As I tried to coast to the side of the freeway all I could think was really this is my life??? I also took Dave's directions to a Target on my way home and instead ended up at a Nordstrom Rack to buy us some more "comfy" hospital clothes. I'm a Target freak and laughed that he thought he knew where one was that I'd never been to before. I never found it as I really only had 20 minutes to run in/run out. Instead I found the one store I could shop in for hours and Dave was laughing about it as well!
I'm home ready to snuggle with Logan and worried about my lack of watermarks on my pictures. As a result I don't have any pictures to share tonight.
Tomorrow, Dave will be posting. He wants to and I can't wait to see what he has to say.

Thank you for all of your love. Thank you for loving our baby girl. We've already promised her the biggest 1st birthday party with her brother if she can get home to us and if not we will celebrate their birthday as soon as we can. And, you're all invited! We just want this behind us and our smiling baby princess pretty pants back n her crib.

Hug your babies tonight. No matter how old they are. Life is short and we are given small opportunities to recognize that and then take advantage of each day/hour/minute/moment we have here to make a difference.

Dave, Megan, Logan, Mason and courageous Riley!

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