Reality sets in..

After discharge on Thursday, June 10th we headed to a hotel in Seattle for the night. We had a beautiful view of Lake Union and Brody was able to watch several sea planes take off before the sun set. We got dinner, I was able to bathe Kaelyn for the first time in nearly a week and we settled in to our two queen beds. When I woke the next morning I couldnt believe it when I looked at the clock and saw 10:30 am. We were all so exhausted that even the baby slept 12 straight hours! When a six week old sleeps 12 hours you know that rest is hard to come by in a hospital :). We showered, dressed, went to Children's for Brody's treatment and made the 5 hour drive back home to Portland.

Friday was a long day. We got home close to 10 pm. I had to get all Brody's medications in order for his evening doses right away. As I arranged and organized the dozen or so bottles in front of me, reality set in. I had for weeks prepared myself mentally of the possibility that restarting treatment was necessary. Somewhere in that rush to get his immune system under control and the fevers stopped I somehow forgot all that this treatment protocol entailed. I guess I was only remembering the second half of treatment from the first go round. Brody had started treatment in February, he was much sicker than he is now and he also had a severe bacteria infection in his blood, blood clots and an infected PICC line that took two weeks to clear up. So, the first month of treatment last time was spent in the hospital chasing secondary infections. Now, looking back, I was probably thinking about month two of treatment and thinking that's what this would be like. One of the things I've learned is that this all very unpredictable and its best to take things literally one day at a time. Not only that, but if you think too far ahead it quickly becomes overwhelming. When you look at the line up of twice daily medications, lovenox injections, daily maintenance of his central line, all the work of covering that line to give him daily baths, you have to take that one day at a time otherwise its overwhelming as a caregiver. Thank goodness Brody is two and has no idea of the long road ahead otherwise, I think it would be even more overwhelming than it already is.

Yesterday, Saturday June 12th, we took Brody and Kaelyn to Farmer's Market. We want to get Brody out and off the couch so he's not, and we're not, constantly focused on him being sick. Like I mentioned, we have to take it one day at a time, but we're hopeful--baring no secondary set backs--that in the weeks ahead he'll start to feel a little more like himself again. Last time this didn't happen until he was tapered completely off the medications (9 weeks). This is likely our reality again, but our goal is to make him feel as normal as possible and encourage him to play, and eat and walk and talk. I dont know how to put in to words how difficult it is as a mother to see your two year old so sick and so miserable for such extended periods of time. Although we are much more conditioned to his illness than we were in February and March of this year, it doesnt necessarily make it any easier.

My goal, now that we are back home, is to try and write here daily so its more of a true reflection of the experience so that Brody can look back on it when he's older and better understand what he went through. These first three posts have been quick summaries without a lot of the detail. I'm also going to start adding photos. Maybe I'll even get Jeff, who is a much better writer than I, to add a post now and again. Speaking of writing, thank you to all of you who've given me praise. Tom Hastings, my favorite Portland State professor and follower of this blog (although I think he's too old school to actually sign up as a follower :)), is to be thanked for this. Ive taken many classes from Tom and he makes us write constantly... so, thanks Tom :). Really, no sarcasm added whatsoever :).

I sit in our backyard on this gorgeous, sunny day under the umbrella (while Jeff mows the lawn) typing away on my laptop. Brody and Kaelyn are both laying here with me with Brody bitching and moaning :) and Kaelyn staring at her hand wondering how to get it in her mouth. Brody's day has consisted of countless oral medications, an injection of blood thinner to the belly and laying still for 10 minutes while I clean and flush his double lumen central line. He then enjoyed a miralax laced hot chocolate from starbucks and bites of breakfast that he wants but refuses to eat out of what we can only guess is some sort of exertion of control. I was hoping being outside and enjoying the fresh air might make him feel better, it doesnt, but it does make me feel better :). Sunshine always lifts my spirits. Kade will be home in 5 hours, we haven't seen him in a week so we all miss him but Brody probably misses him the most and Kade has a way of making him smile even when he doesnt want to.

Tomorrow is the beginning of week two... but who's counting :).