Two Steps Forward, One Step Back

Tuesday, July 14, 2009

Almost a week after the accident. It seems we’ve come so far but have so far to go. Yesterday was a sucky day. I get a lot of “Well…he’s doing this but he’s not doing that.” It’s tough because nobody really knows what it all means. I’ve been reading online about others that went through what Christian did and I’ve been reading blogs but while they are helpful and insightful, they also tend to make you feel less hopeful reading the prognossis of other little ones who suffered near drowning. That along with the doctors hemming and hawing, and don’t even get me started on the neurologists, make for a pretty helpless feeling day.
Yesterday I had to get away. Not away from Christian because I will live here if I need to. As long as Christian is here, I am here. But from everyone. I love my family and friends and that they constantly call and check up on Christian. They’re visiting every day. But it’s tough when you don’t have an update on his condition. Or there’s nothing fun and exciting to report. Or when the doctor tells you negative things. You don’t really want to talk to anyone after that. Everyone wants to be around me to make sure I’m okay and I’m not that person who needs someone there all the time. I’m the opposite. I desperately cherish my alone time. Where I can be alone with my thoughts, my fears, my sobbing, and so I can just talk to God one on one. So I left the hospital, sat in my truck and bawled like a baby. I talked to God and I declared that Christian is coming home with us. He will sleep in his bed, he will play with his ball, he will come back to us and that was that.
I came back up to see Christian and he actually tried to keep his eyes open for me and actively look at me for the first time that day as I was talking to him. My faith was restored. Little miracles. Even just him trying to respond to me by opening his eyes tells me he is still fighting. The doctors don’t know what he can do. Nobody does but God. And I think God isn’t done working His miracles yet.
There’s a night nurse here that…well let’s just say if she was off her shift tonight and the next and the next I wouldn’t mind. She’s a good nurse but hardly positive. She’s old school. She has a quasi-beehive and everything. She says things like this…
“Well, the neurologists are just trying to be realistic.” – Nurse K
“Is he taking those breaths on his own?” – Me, after they switched from bagging to ventilator and back.
“Well, that’s just a reflex.” – Nurse K
“It’s been hard.” – Me
“Well, it’s not going to get any easier.” – Nurse K
Now, this doesn’t occur in the same conversation. These are just little comments she makes that counteract any kind of hope you draw from a situation. And if you’ve ever dealt with a neurologist, you know it’s always gloom and doom but she seemed to be the only nurse that felt the need to defend them.
Last night Christian had his MRI and I’m not expecting them to tell me good news. Not because he’s not healing, I truly believe he’s being healed, it’s because I’m preparing myself to remain faithful no matter what the doctors say. The truth is they don’t know. There is so much about the brain they simply only guess at.
After the MRI, I layed my head down next to Christian’s in his beddy (everything ends in –y at my house…beddy, nappy, juicy, ouchy, sicky, etc.) I cried next to him and looking into his little eyes I wondered if I’d ever see my Christian again. The loud, demanding, screaming, and yelling, full of life Christian that was here just last week, tugging on my shirt to nurse or my pants to get picked up. I know Christian is under all that mess just waiting to bust out!
So after Nurse K crushed me last night I woke up this morning to overhear that Christian tried to cough!!! This is amazing because it means things are rewiring and trying to work. He’s beginning to spike a little fever because he may have aspirated some vomit. He’s been tolerating feedings well but I’m having a hard time producing as much milk as they need (I was having problems before the accident but he was on solids so it was no big deal). I allowed them to supplement with formula so I think he may be rejecting it. He wants Mommy’s milky. So I’m trying to bolster up my supply. I drank Gatorade and I’ll try to get someone to bring me some oatmeal cookies.
All is well for the moment. Manny is sleeping and the room is cold. Christian was awake a moment ago and I’m looking at his fat, sausage toes. He makes progress every day as his brain tries to get it together and relearn how to control his body. But at this moment, most of all, I am happy because there is a changing of the guard from night nurse to day nurse and Perla, my favorite nurse of all of them, just walked in and announced she’d be Christian’s nurse today. It will be a good day today.