Tuesday, July 23, 2013

the post, part three.

when encephalitis appears to be the diagnosis, doctors look for causes like lyme disease, cat scratch fever, or even herpes. when rowan first got sick and we were waiting for test results they administered antibiotics for two of these things to be preventive. we knew she was positive for rotavirus but everyone refused for sometime to believe that the encephalitis could possibly have been caused by that. despite the fact i had several people come forward and say they had experienced the exact same thing, despite the fact it couldn't have been anything else. it is so rare that as i googled "encephalitis caused by rotavirus" it didn't send down a list of possible searches like google always does. in fact, i could only find some cases in japan, just like the doctors at mary bridge were able to dig up. encephalitis is already sort of one in a million, but caused by rotavirus...

we were transferred to children's because mary bridge didn't have a intense impatient rehab program and that is what rowan needed. they thought the timing was perfect and wanted to keep up momentum on her progress. there had been talk about us going home for a little while in between but later on changed their minds and wanted to build on how well she had done her her therapy sessions at mary bridge and they wanted her there right away. the number three weeks had been thrown around at this point, it looked like i would be sleeping on a hospital couch for a little longer. moving to children's wasn't like when we headed to mary bridge - it wasn't about tubes, and wires and drugs and the unknown. we actually looked forward to this change that was about progress and the future and getting rowan her life back.

when we got to children's rowan could barely sit up on her own at this point and with newfound, but limited movement, she had begun throwing herself around impulsively which led to the enclosed bed that you became familiar with seeing during our stay there. it was somewhat of a whirlwind when we first got there - adjusting from one hospital to the next quickly became my least favorite thing and i had to hunt down meals and nurses and medications. the first few hours were a revolving door of therapists, doctors, staff, and nurses coming in and dropping off cards to our patient care bible, i mean notebook.

rowan was still not talking other then a few sporadic "hi!" and a lot of mumbling. she was on a pureed and honey thick liquid diet that she was barely tolerating. right away her pt shannon discovered her positive response to deep pressure and started using a phrase that i came to love, "quiet body." her first schedule was posted and it was long days of physical therapy (pt), speech therapy (st), occupation therapy (ot, fine motor like eating, writing, etc), recreation therapy (rt, fun things like music therapy), visits with the physiologist, doctors, social workers, etc. days were busy to say the least. she had half a schedule on saturdays and sundays totally off.

on our second day there she was finally clear of the rotavirus and given the ok to explore the fun the hospital had to offer and we celebrated by taking a wheelchair ride out in the sprinkling rain as the sun was setting. it was perfection. after that we became regulars in the playroom, borrowing movies and books, doing crafts, watching whatever "talent" they had their that day, meeting people like seattle storm, the husky football players, etc.

before we knew it rowan had progressed to a mix of walking with the gait belt (a belt that someone holds onto to assist rowan walking and catch her if she falls) and using her wheel chair. speech was progressing as quickly but she could get out some important base sounds like ah and ha. ot had her eating on her own, working on getting dressed etc. closer to when we went home we had a play visit at the university village shopping center. there it was even more apparent how unaware of her safely and impulsive rowan was - while toy shopping if she wanted a toy low tot he ground she would drop suddenly versus lowering herself slowly and safely and etc.

rowan quickly befriended a little girl name miyah who like rowan was totally healthy, then got strep throat, a run of the mill childhood illness that long story short led to a brain injury. she was so sweet and they had so much fun playing in the playroom or making their moms chase them around the playground. she also got to know austin, another five year old, who had been in a terrible accident that left him completely paralyzed and on a trach. austin was too sweet for words - it is amazing how much a little boy can say with just his smile and eyes!

over the next two and a half weeks rowan continued to blow her doctors and therapist away with how well she was doing. we learned to kind of ignore half of what they said though because they always seem to err on the side of caution and make you feel like rowan could do half of what she really could just to be safe. i will talk more about that when i get to our first few weeks home. after a fluoroscopy study where they watched rowan eat and drink on x-ray, she was able to move up to soft mechanical food mixed with some puree. the concern was that it was still taking her a bit to chew and swallow and all caloric value is lost if it takes you forever to finish your meal. there was no change on liquids because she was still almost totally aspirating any when she drank, it was a little better when she drank through a straw with a tilted down head though.

toward the end of her stay we started getting day passes on the weekend to take her out of the hospital. it was the best feeling in the world for everyone. the first one we had gotten passes to the zoo from the hospital and amanda and ellie joined us. it was warm and we ended up spending more time eating cotton candy and getting our face painted then we did hunting down animals. the next day we took rowan home for a visit and to gage how she did around the house and what we needed to change for her to come home. we stopped at costco first and it really felt so great to be doing normal things again. neighbors stopped by to say hi as they missed seeing rowan zoom around the neighborhood on her scooter or out playing chalk. we were a little worried about how she would do going back to the hospital but she did great, excited to get back to her friends and tent bed and being a only child, ha!

finally it was time for rowan to go home! she had met all of the goals they set for her upon arrival like being continent, being safe, eating and drinking the right amount, doing self care with minimal assistance, having a stable mood, etc etc. we had to acquire a five point harness for her again as she had recently outgrown one and had been sitting in a tall back booster with car seatbelt. her room was set up with a mattress on the floor, a clear and easy path to the bathroom, and gates at the top and bottom of the stairs so she wouldn't be tempted to use them on her own. in the days leading up to her discharge i had her pt work with her on safe choices at home like crawling when i couldn't help her walk and using the stairs on her bottom. we bought her a pottery barn anywhere chair for a safe seating option low to the floor and as a special treat to use in the hospital when she could safely be out of her bed more.

the idea for her discharge gift was tricky to plan out. pinterest was not helping me at all so i had to really get the creative juices flowing. after scouring etsy i knew i wanted cookies so i went to the internets for shop suggestions - people all over the country were suggesting flour-de-lis who ended up being very local to seattle. i instantly came up with the idea for the brain and bow cookie - rowan had become famouse at all the hospitals for her bow collection and since she was in for a brain injury it seemed so fitting to have little brains wearing bows like hers. i can't even begin to tell you how awesome it was working with samantha! she totally put my vision into a reality with the perfect cookie. she was even super excited to work with us as her and her husband had done a lot of work with ronald mcdonald house and children's. the cookies came wrapped up and ready for handing out. before we did that though i added a little card that said, "what did the hippocampus say during its retirement speech? thanks for the memories! thanks for helping our girl, nurturing her neurons, and loving her lobes. enjoy a cookie with us to celebrate how far rowan has come! xoxo, the rohr-devine family."

next week i will wrap up our whole journey! rowan is doing so so good and like i keep saying, blows her therapists and doctors away daily. we got good news after some testing this week and providence is already cutting back her therapies. the first week home really surprised us as it was nothing like we expected and i can't wait to share it with you!


melissa rohr said...

I'm so glad Rowan's making such strides! Amazing story, and such fabulous cookies. What a great idea!