See Christian and Lola's ISR video!

Tuesday, July 14, 2009

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.


ferfischer said...

Oh sheesh. I hate nurses like that. And doctors too. Ask for a hospital pump, they should give you one. Christian IS healing. He WILL come back to you, and you WILL go home with him. The brain constantly heals and learns, never forget that! And, I too, need to be alone when I'm "processing things" - take the time, and make sure everyone else gives you the time you need. We're here for you either way. I wanted to feel supported but not be surrounded, so I hid in our room and didn't talk to anyone. Do what you need to do - it's OK to be selfish right now and get what you need for Christian.

sunflourchic said...

you are so strong. it must be SO hard to deal with nurses/staff like that. i hope you have a great day!

Makenzies Miracle said...

My name is Pam. When my daughter was 18 months old she choked on a chraker and suffered a brain injury. She is the light of my life! I am getting ready to go take my daughter for her 1st stem cell injection in about 10 min and don't have a ton of time right now to say what I want to you right now! I do want you to know that you are not alone! Every word that you wrote I heard! No hope! DISREGARD! I fact you have the right to ask for thet nurse not to treat your child! I told the doctors that no one that did not have hope and believe that my daught would live and heal would be aload in her room and there would be NO negitive vibes aloud NONE!!!! my daughters site is! my e mail is PLEASE if you need ANYTHING at all let me know!!! I would have given anything to talk to someone about all of this from the very beginnig! I also understand the need to be left alone!!! I will have more time tonight! I hope you are having a better day!

Tara said...

I hope little Christian recovers fully Shauna. I know the feeling of needing to be left alone. When Collin was in the hospital both times, I too just wanted to be left alone and often just ignored phone calls. Best of luck to you and I will check back for updates.

Brooke said...

Oh Shauna.....I can't even imagine what is like to have to go through what you are......Just like you said there are steps forward and steps back. We are ALL praying and waiting for the day that he DOES come home with you and he DOES tug at your pants leg wanting to be picked up and loved on! Keep loving all over him! Keep lying your head down next to his! I think that's one of the BEST Things for him is to know you are there and FEEL you are there....physically!! Touch is very important in my opinion!! I think he KNOWS it's the touch of his mommy or daddy and that has to be a comfort to him even if he can't tell you that it is!!
Screw mean ol' nurse ratchett!! Blah.....don't listen to her.....sounds like she's been nursing too long and has lost some of her compassion. The day that ever happens to me I will stop being a bedside nurse!! Parents need optimism.......something to hope for.....not doom and gloom.....STAY STRONG mommy!!! You're a do what YOU need to do...go sit in your truck and get away from it all....cry your eyes out.....Whatever helps you get through this horrible situation you are in.
Hope you are having a better day. Hope the fever goes away!! Good luck with the pumping!! It sucks for sure.....the lactation cookies with the flax seed did wonders for me!! Drink lot's of water and Gatorade too like you already mentioned......I'm pulling for your baby boy and won't stop until he's home!!

XOXOXOXOXO to everyone!!

Rochelle said...

Shauna, still praying for Christian (and you) and will pray for the night nurse to show more compassion and be more encouraging and hopeful, too. You may need to ask that she not be assigned to Christian if you feel she's not helpful to you and Christian. I agree with the other poster that you need to have the help of nurses and doctors that are hopeful and encouraging, willing to celebrate the small miracles and press forward to see more. I am praying for something good from the MRI results today. Don't worry about going to the truck to be alone and crying - that's a normal reaction to this type of situation. You need to handle your sorrow and pain in your own way. Everyone will understand. Please take care of yourself, eat and keep up your strength for Christian and the baby. Hugs and kisses to Christian. So glad to hear that he coughed. Keep your faith, be strong and cherish every little miracle that comes along. Small steps need to be celebrated! Love ya!

Shirley said...

Shauna, I KNOW Christian is coming back to you. Hasn't he suprised the doctors already? Medicine is still a practice of the unknown, and the biggest mystery of our bodies is our brain. Even DH and his colleagues agree. Children have so much plasticity in their brains, and he is so young that he is definitely cable of forming new connections with his brain cells. He is a fighter, and when he looks around and see's his mommy, daddy, brother, and family fighting with him, he will find a way back. He's already starting to!

I hope the Gatorade and oatmeal help your supply. Can you ask for a Medela Symphony pump from the hospital? It definitely helps with the output. Also, if the nurses can give you a heat pack to lay over your bbs before and during pumping, you may be able to get even more milk out for Christian.

We're sending all of our love and prayers to you and your family. Christian is a part of our everyday lives now. Jordan sends hugs & kisses to his little buddy!


vannak2 said...

I'm so sorry you are going through's so hard to have someone around that isn't full of hope. Just remember that you are Christian's source of strength right no matter what dismal picture others may try to know in your heart the miracles are've already seen it. Don't be afraid to ask for what you need...a different nurse, a hospital pump, to be left alone. I will continue to pray for more miracles!


Gabriella said...

Stay strong Shauna and don't listen to anyone who is bringing you down. Believe in him, like you do, he can do it, he's done so much already. I'm thinking about you guys all day, thank you for the update.

Eliisa said...

I hate that you're dealing with negativity like that. Why nurses who can't think positively work in children's wards, I'll never understand. If ANYONE can survive an ordeal like Christian's, it's a baby. His brain is still so plastic and able to be molded. He will get through this.

TLC said...

I agree, maybe ask for that nurse not to speak negative comments aloud. You do not need to be realistic right now, you need to believe in miracles, realistic or not!

Anonymous said...

I hate nurses with a passion! They are such perverts! My God, I can't believe they get away with all the perverted things they do. I truly wish they would all die! I'm serious!!!

Post a Comment

Popular Posts