Tuesday, July 9, 2013

the post, part two

Encephalitis, or inflammation of the brain tissue, is rare, affecting about one in 200,000 people each year in the US. When it strikes, it can be very serious, causing personality changes, seizures, weakness, and other symptoms depending on the part of the brain affected. Children, the elderly, and those with a weak immune system are most vulnerable. The disease is usually caused by one of several viral infections, so it's sometimes referred to as viral encephalitis.

before our feet had barely touched the ground at mary bridge, i was being pulled into a conference room with the new doctor to talk about what was going on and the plan of action. immediately the word encephalitis started getting thrown around, no one we had come into contact with had ever experienced a case of rotavirus turned encephalitis before, so while totally puzzling it was their best diagnosis at the time. my only saving grace through the last twenty-four hours was that every doctor we had worked with thus far was never anything but confident that she would make a full to almost full recovery. however, this type of infection can be very unpredictable and only the next few days would tell.

it was going to be a lot of "only time will tell..." from here on out but the plan was to have her off the vent in the morning and there was a lot of wishful thinking from the doctors that she would be sitting up and talking immediately following. switching hospitals and having to wait while a new team learns your child's case, becomes familiar and can act appropriately can be so frustrating. you begin to feel like you know more of what is going on then the phd's. throw in the fact that the picu had just opened the day before and the staff's heads were spinning trying to find everything from equipment to the linens waste basket...

there were floods of family and friends waiting for us in tacoma when we arrived, so i did not turn down the opportunity to walk outside and let some of rowan's favorite people hold her hand and sit with her while i took a deep breath and tied up some arrangements that needed to be made for us and the other kids, who were now on their way to my aunts with tim. my sister arranged for rowan to have the american girl doll she had been begging for, waiting for her when she woke up, i had food and coffee placed in from of me, my sister started a emergency fund, i borrowed some of my sister in laws underwear and then we waited.

that first night at mary bridge was horrible, i won't even sugar coat it. they kept rowan pretty heavily sedated to avoid her panicking and hurting the tube, she was even tied down with restraints. when ever the sedation would wear off, on the cusp of another dose, she would try and sit up and cry out and yank at her restraints and be sad. then there was the beeping, oh the beeping - when this would drop to low or this would go to high or that would be done administering. we had good nurses and we had not great ones, one that couldn't have been more annoyed every time i sprung out of bed when rowan's heart rate would drop causing a alarm. nothing was wrong, but being so on edge and unfamiliar with what means what, it is so traumatizing. at one point a nurse seemed to be scolding me for being so frantic, and i said, "listen. you are used to this. i am not, so cut me some slack." another nurse in the room helping her sensed that nurse a had obviously misplaced her bedside manner and walked me through what was happening and apologized.

throughout the next early morning rowan began to wake more and appear more aware - this prompted them to start lowering the amount of work the machine was doing and see if she picked up the slack in her breathing. she did, and we began to talk about what was going to happen as we prepared to pull her vent. that all seemed complicated and lengthy and a story about waiting for the right window, then she suddenly seamed over it and next thing i know they pulled it and she was breathing on her own. then, rowan had to be bugged by the RT several times following the removal, by her sticking a thin tube down rowans throat a bit to stimulate a cough and clear all the mucus so that she wouldn't get pneumonia. it had been four days now since she had eaten and talk started to surface about a feeding tube. i pleaded to hold off and they seamed ok with that for now. her doctor started to speculate again that he hoped to see her talking and sitting shortly. i really wished he would stop saying that. although small, one of the saddest moments for me thus far was when i showed rowan her american girl doll - she instantly tried to talk and reach for it and neither did what she wanted and you could literally watch the defeat wash over her face. she was lost and confused and my heart was broken again.

long story short, rowan wasn't bouncing back. really at all right away. while everyone remained positive that she would recover to a degree, it was back to waiting to see if there were any lasting effects of whatever was happening and there was more talk of whether or not it really was encephalitis. it was friday now, she had another eeg that showed some slowing that was in line with the seizures and sedation and loss of motor function. they decided to keep her in the icu longer due to the fact that she still had some stiffening, or residual seizure activity that would make the pediatric floor panic. then saturday we moved out of the icu and she finally got to drink some juice, honey thick. we were met by a cheerful but hard to track down team of nurses and settled into another unit that had just opened. i kept joking that rowans room had nothing but good juju since she was it's first patient. on sunday, all of her tests had finally come back ruling out other possible infections and she was able to stop the unnecessary antibiotics that were put in place just in case. one of which was terrible on the tissue and causing rowan to blow through her veins and ivs. i fought like hell to keep them from doing a new "just in case" port when she wasn't needing it really and at this point a quick blood draw here and there seamed far more glamorous then keeping the iv in for easy access. today was the day we also saw our first smile, rowan's best friend megan came to visit and rowan immediately cracked a grin. it was a unfamiliar one, but one all the same. by monday she was a giggly mess, a lot due to stress, over stimulation, and the brain injury and some just because she was plain ole' happy at times.

on the pediatric floor, we settled into a new normal. it was days full of therapy, advocating for rowan and her needs, swallow tests, a revolving door of visitors, sneaking in showers and meals, shift changes, pureed meats, etc etc. my heart was so full of the love we were receiving from all over the world, i could literally feel all of the prayers that were on rowan at any giving time. it was you, who healed her, through Him. her walls were covered with cards and pictures from friends and strangers. every surface was full of flowers and bears and candy and fun treats that you were all so thoughtful to send her. i can't even begin to describe to you the joy that spread across rowans face each time i showed her something that had come for her.

rowan was stuck on isolation for the duration of her stay. she was still positive for rotavirus and we all went stir-crazy right along with her.

when it was settled on that she had encephalitis, her doctors finally accepted that it was caused by the rotavirus, they started digging deeper and found some case studies out of japan. they noted that the cerebellum was specifically affected - which made total sense if you had seen how she walked and how it sounded if she tried to talk and so on. when you drink alcohol it is your cerebellum that is affected- you slur, you can't walk in a straight line, etc. if it helps to think of it that way.

it was finally monday, after a few therapy sessions, that we learned that rowan would be transferring to children's hospital for their inpatient therapy. this was hard to hear after talk of her going home for a bit, but they felt, and we agreed, that we needed to keep up the momentum of progress. she was walking, with a lot of assistance, but walking. she could somewhat feed herself, unscrew a cap, sit on the toilet herself, etc. at this point we were begging in our prayers for speech to come back and after many nights of clear and unclear talking in her sleep i was sure it was coming soon, but it didn't. so now the plan was to get her physically ready to withstand the pressure and demand of the therapy program at children's. this meant being able to continue therapy for around three hours total in a day without getting too tired and sitting for even a short period on her own. all the while rowan continued to blow away the doctors with her progress she quickly became a favorite on the floor, the famous girl with the bow collection. the next monday was the decided day for the transfer so the rest of the week became a waiting game. she kept up with very simple therapy and then monday rolled around.

we had gotten up early and started packing wagon full after wagon full of rowan's new stuff down to the car. we made arrangements, informed our families, prepared with her team, and so on when a nurse after just telling us we would leave soon, told us we were possibly not going and to sit tight. then we were not going till tuesday, then we were going again and transport would be there soon. i can't promise that i stayed cool-headed and nice through that ordeal. rowan loved her ambulance ride, watching out the window the whole ride, smiling at a motorcycle that passed, bummed there were no sirens this time. the transport team filled the time by talking with me about how in our area, there had been a major rise in hospitalizations with rotavirus.

our arrival to children's was interesting, it is really quite the experience having to adjust from hospital to the next. up next i will share the final part of rowan's hospitalization and talk more about where we are today, a month later!


melissa rohr said...

oh man melissa...what a scary traumatic time. Your sweet girl is still in all our prayers.

melissa rohr said...

Literally just cried through this entire thing. I remember the helpless feeling I had when I had to watch Liam die in my arms. Wgile his story is much different than Rowans, I still sympathize with that horrific time.

I'm thrilled she is feeling better & I am working on her bows!

melissa rohr said...

That's incredibly scary stuff. I'm hopeful there's been lots of improvement, for you and for Rowan.