Monday, May 13, 2013

things go awry sometimes

this has to be a nightmare right? a constant horrifying loop where i am living in a hospital, my daughter was on a ventilator thirty-six hours ago,and we have a long road of recovery ahead of us. i can't even go into too much detail about things right now, even just thinking on it for long breaks my heart all over again. how did we get here? how did rota-virus turn into this current brain impairment?

long story short rowan suffered from a infection that shut down her motor skills - things got very bad before they started to get better. today, she is improving in strides but it is as they always say, "one step forward two steps back..." and that has been the hardest part about this whole thing. this morning we were going home in a few days and by the afternoon we were looking at a transfer to seattle children's and three weeks of inpatient rehab and therapy (this is worst case scenario so for all intents and purposes, let's just go about thinking rowan, being the fire cracker she is, will kick this things butt and be the "good" case results).

don't take your kids health for granted - rowan is sad and constantly twists and fidgets in a bed that causes her discomfort because some kid spread rota-virus on something rowan touched...

we got off the vent on friday, moved out of the icu saturday, smiled and ate on sunday, got our ivs and wires out, laughed and talked in our sleep and walked with support on monday. tuesday is going to kick butt, i know it. i can't even begin to thank everyone who has had rowan in their thoughts and prayers. i have literally felt each one wrapped around her and our family. the kindness from our friends near and far has brought tears to my eyes and the same time providing me with hope is easily one of my saddest moments.

i told a friend that i usually have difficulty relying on others, taking so much - but one thing this whole experience is teaching me and that is sometimes you just have to hand "it" all over. i am not sure i would be surviving without the revolving door of those to listen to me vent and see me cry that bring me coffee and snuggle my kids when i can't.

eventually i'll talk more about her diagnosis and the whole story, because what is happening is rare enough, if i can settle even one mamas heart then it is worth reliving it, but i am not there yet. for now we look at everything she has over come so far, today i made rowan giggle and then i ugly cried tears of joy for an hour after. when rowan's friend came to visit and she realized who it was, she smiled. then today during PT she walked assisted. life is good in its own way.


she isn't talking but i am not discouraged, she isn't using her hands a ton but seeing some movement return to them gives me so much hope for a quick recovery. we love the nurses here and tim and i laugh about the, younger then us, resident who is really going fond of rowan. she plays possum with the doctors, letting them believe that she can do less then we see her do all day long. i am glad in the midst of everything going on, the confusion she must be feeling in her head, that she still has a sense of humor.


tim is taken a lot of time of work and if your a single income family then you know what that will mean for us. i try not to think about that too much right now - i'd live in a one room apartment as long as it was filled with rowan's laughter again. mri, ct, spinal tap are all things i am nervous to see listed on a bill but so trivial and unimportant in the moment. i miss my little kids and they miss me. robin's and my nursing relationship will never be the same and that makes me sad like you will never know.

my brain is fried, my weight is down, my texts are full of errors but i have hope in healing and faith in His hands over my daughter. keep us in your prayers - for healing, for peace, for guidance  for answers, for rowan to be herself again.

xoxo,
melissa

9 comments:

melissa rohr said...

Beautifully written. Love you guys. Prayers for Rowan <3 We know she can kick this.

melissa rohr said...

Praying for Rowan and your family every day!

melissa rohr said...

Always praying for your family!! xoxoxo

melissa rohr said...

Praying for you and your family! xxx

melissa rohr said...

I hope she recovers quickly and is home with her family! Well wishes for sweet girl. May I ask whether she was immunized for the rotavirus? Im pregnant with my first and my husband and I are trying to decide on wether to go the vaccine route. Thank you for sharing your story

melissa rohr said...

Sending you love and strength <3

melissa rohr said...

I just want you to know that I am praying for your family! Please continue to post images to IG because every time it reminds us to send up a prayer. Big hugs, Mama.

melissa rohr said...

Wishing her a speedy recovery. My son had rotovirus when he was 20 months old and almost died from that. He had over 105 fever and the hospital won't admit him in until I FORCED them to. He was so limp in my arms; he was my little firecracker just like your Rowen. None of the fever reducing meds helped. It was the most horrifying time. He had IV in and he was finally well enough to go home 2 days later. If they have immunization for that. I would take it in a heartbeat. None of my kids were. It was during a time there was no such thing for rotovirus vaccine back then.

melissa rohr said...

I haven't checked my bloglovin' feed for quite sometime and this post caught my eye. I'm in tears right now and couldn't image what you're going through. As a mama of two little ones I know how hard it is even when they have a runny nose! I will be praying for little Rowan for a quick and easy recovery. Remember, miracles DO happen. I know that doesn't mean much now, but stay strong and positive. Big hugs to all of you!