Thursday, June 27, 2013

the post, part one.

it feels weird writing real words, feeling less jumbled then when i would quickly type you a update as i fought off the tylenol pm i had just taken. to not feel anxious while i stole some human moments at home while tim watched over our baby. getting back to our new normal feels less and less weird as time goes on but here we are, almost july, and i promised you i would return so here i am! i have five thousand posts swirling around in my head - some that were coming up right when everything fell apart and a lot about what we went through. as much as i want to just give away stuff from my favorite etsy shops and tell you about ipad apps we are in love with and gush about fun summer going-ons, i think we just need to get these posts out of the way, lay the whole story out on the table, so here it goes...

sunday afternoon, after we had spent the day in the sun, celebrating a early mother's day, we packed into the car and made the trek over the mountains to drop rowan off with her dad for the week. she was sad and weary of going as always and clung to me as we said goodbye, i took her to the bathroom, we hugged and said our goodbyes and then i headed home. when night turned into day, i saw tim off to work and we started our day at home. just a little while into the morning i got a call from tim that he was miserably sick and headed home soon, while i waited i noticed that i had a missed call and voicemail from rowan's dad. it was alerting me to the fact that rowan was sick too and having a hard time - i called back to confirm that rowan must have going on whatever tim has, assuming it was some sort of food related thing at that point.

monday turned into tuesday and there wasn't much new to report on rowan, she seemed to be doing a little better but was still not herself (all the while tim was violently ill, in a ton of pain). then, that night as i headed to bed i got the call that they were at the er, that rowan hadn't been able to keep anything down and was complaining of being dizzy. i stayed awake for a bit waiting for updates and when it seemed like they would just be rehydrating her then sending her home, i finally let myself rest. i woke up that morning to the news that rowan had been admitted (to kadlec in the tri-cities, about three-hundred miles from our home), and her dad was asking me to come, i tired not to panic, he wouldn't have asked if it wasn't serious. we played out a million scenarios of who would go, who would stay, where the kids would go, etc and in the end a very sick and disgruntled tim tagged along with both kids.

at this point, we were still assuming rowan had a bad stomach bug and just needed some iv fluids, the reason for being admitted was that she had showing some odd shaking that was possibly seizure activity (although her eeg and ct was clear) and appeared to be moderately dehydrated. that morning she was very tired - eyes half open, very little talking but was able to eat a yogurt and some grapes and answer some simple choice questions.

fast forward, i arrived and she could barely open her eyes anymore and was not talking. she was crying out in pain, a pain that was rolling in like contractions and causing her to stiffen up, legs, fingers and hands locked. this went on for a while but the doctor kept behaving like "the fluids should do the trick" and we would be on our way. tim got us a hotel and took the kids to rest, rowan had already had the eeg but now they were suggesting a mri, i fought the idea of having her sedated with the state she was in and the doctor agreed to try it without. rowan was so out of it that she stayed perfectly still and they got the mri, which looked good but with a nonspecific "spot" which no one seemed concerned about. i agreed to let her dad stay with her that night and headed to the hotel to rest.

up early and anxious to get back to the hotel, we quickly ate our breakfast and headed in. rowan hadn't opened her eyes in hours, had zero talking, and was still screaming in pain. no one moved quick at this hospital so we constantly had to hunt people down to help rowan and witness things that were happening - at this point a nurse confirmed that she had a positive rotavirus test that confirmed her preschools suspicions of a bad bug everyone was sick with right now. when her doctor finally noticed the stiffness with the moaning he was immediately concerned - her joints were locked so tight, the idea of seizures was back on the table and he wanted to do a spinal tap. this is where i lost it, i couldn't hold back the tears anymore - my tiny child was going to have to have a very painful procedure and they couldn't sedate her at this point, i forget why, but i started lecturing the nurse about how she better not let go of her hand for even a second and started helping her pick rowans favorite songs to play in the procedure room (we were advised we shouldn't come in).

this is where the whole damn thing started spiraling out of control...

just before the spinal tap, the decision was made to transfer us to seattle, and we started to make preparations for that. rowan got back from the spinal tap, and we were told she did pretty good and barely whimpered through it. the fluid was clear but had elevated white cells and it was confirmed that there was in fact inflammation/swelling in her brain. while we waited for the next move the doctor came in and noticed that rowan was making a gurgle sound in her throat as she breathed. he stepped out for a minute and when he came back a flood of people and equipment followed and he explained that he was concerned because that sound along with all her other decreased motor activity told him that her breathing was next to go and she could choke on her saliva. i lost it again, why was this happening?

again it was suggested that we not watch, while it was hard to walk away, i didn't want to be left with the images of having that done to her in my head, and her team really was wonderful and i could trust them. the placing of the vent seemed to take longer then they explained so i got antsy fast. my heart was breaking for my child and we were summoned back in, seeing your tiny human like that is almost impossible for the mama heart. she was so sick and helpless and at this point, while i and her doctor were confident she would bounce back, when and how was a question now. it was a headache trying to keep up with when and where we were going - she needed a icu bed because of the vent and i guess children's was full. i even had my sister and friend on the phone with big wigs there and there just   wasn't   room. when harborview, a trauma center for, i don't know, anything else, was suggested my sister started working to get her into virgina mason or swedish. eventually, they settled on mary bridge in tacoma, which i had heard great things about and their children's wing had literally just opened the day before and was new and state of the art.

eventually her transport team showed up and everything became a blur. it took sometime to transfer all of her machines, sign papers, pack our stuff, and send those who were driving on their way. then, we rode in a ambulance to a tiny air field in the tri-cities and boarded the tiniest fixed wing plane where i immediately starting thinking of last seasons grey's finale. if you don't love flying, then i promise you would have hated this plane. it is loud and bumpy and you feel every little gust of wind.

we arrived in seattle, at boing field about forty-five minutes later. because of traffic they had the sirens on as we made our trek to tacoma and i joked about how rowan would be so disappointed that she wasn't awake for all of this special treatment. rowan did great on the flight and ride to mary bridge, with great vitals and only a little fever on the way there.

it is crazy the way as a mama, you can't even begin to imagine how you would deal with an event like this. then it happens to you, and at least for me, a flip just switched. there wasn't room for me to be anxious and broken and fall apart on rowan. i had to be patient and strong and decisive, some of these things are not my strong suit. people look at you like they are digging deep to figure out how you are not falling apart and they ask how you are and the best answer you can give them is, "fine." i was sad and scared but i could never dwell on those thoughts for more then a second, that is a slippery slope to go down...

coming soon, i will talk about our stay at mary bridge children's in tacoma.


melissa rohr said...

What a roller coaster ride you have been on. Still praying for Rowan and family. Give Rowan a hug from me. Mrs. Brunken

melissa rohr said...

I was crying so hard as I read this. I cannot even imagine.

melissa rohr said...

Wow, this just brought back a flood of memories from a time when my youngest daughter who was only months old at the time suffered from a terrible case of RSV. The tears are flowing. So many similarities in what you went through that I had to deal with as well. Praying for you and your family as you journey down this road to recovery.

melissa rohr said...

Oh wow, I just happened on to your site tonight when I saw your cute shorts on bloglovin. Then I read this. There are no words. I am so incredibly sorry for all you guys have been through and hoping the worst is behind you. That's a lot for anyone to bear. Sending ((Hugs))