October 7 home not home

One of the hardest things about being in the hospital is knowing that we’re in the right place and we’re safe, simultaneously battling this itchiness to go home and escape the intensity of these surroundings. The waiting is odd and wrapped with anticipation that is laced with anxiety. It isn’t appetizing fair for the mind or spirit.

On this particular day, we rode a ride that I hope never to experience again!

October 7, 2008
Subject: We’re Going HOME!!!

I'm on my way to take Reo to school but wanted to tell you that Doc called a little while ago and said, "ANC of 900!" That's right folks! 9 HUNDRED!! I'm so amazed. The body is such an incredible thing! WOW!! They had a good night last night too. I know we slept really well here. I feel so much better! Aria had her chest x-ray at 4 am this morning. Why they got a child up that early is sort of beyond me but who cares?! We're going home! Dr. Trobaugh doesn't round until later this morning and hasn't read the x-ray yet so we're not going anywhere until later on. Hopefully, we'll be out around noon. We'll see. Suffice it to say, we are over the moon, blissed-out happy!!!

Subject: we’re NOT going home afterall
@@###!!$&*$!!!!!! and SUPER @*!!#$%!!!! Someone read the numbers wrong and Doc said that he didn't check the math. Poor guy! Damn it! Aria's ANC is actually only 140. Still way better than 45 yesterday but below the 200 or so that we need. Dr. Trobaugh has made exceptions BUT, Aria's chest x-ray remains unchanged. This also isn't great news. Oh, by the way, in case there was ANY question, I am SO NOT a radiologist. I thought it was her left lung. NOPE!! The lung in question is the right one. They aren't calling it a mass or any true infiltrate, (whatever that means. Doc tried to explain it to me but I was so tired that I just nodded as if I understood but I don't really!), but they are saying that it is 'hazey'. We don't really know what that means and Doc wants to talk to Dr. Trobaugh about it pretty specifically today. Suffice it to say, that because it has been unchanged for 3 days, it is probably viral instead of bacterial, which is why antibiotics are NOT kicking its ass. Shoot! shoot! shoot!! Aria is in good spirits and is feeling really well. My guess is that we just have to wait for that ANC to come up. If she continues on this course, we ought to hit that mark tomorrow. One day at a time folks. One day at a time.. I must say a whopping thank you for coming along with me on this ride!! It helps so much. I can see you all riding right along with me and the comfort that brings is beyond expression.

Subject: Going home for REAL!
What a rIde! Doc just called and said that Dr. Trobaugh is letting us go home! She said that Aria's lungs sound clear and her overall counts look good even though her ANC is still low. They're going to give Aria a big dose of antibiotic before she leaves and we'll go back on Friday to check her counts again, which is something that was already scheduled. Here we go!!! I'll be going to get them in a few hours.

Subject: We’re HOME!
Just wanted to let you all know that we are home and settled in. Aria is beside herself! She thought it was very fun wearing her new footsie jammies home and being carried the entire time so the feet wouldn't get all dirty! What a spoiled little pixie!! Heavens! She is absolutely exhausted! She fell fast asleep on the drive home and Doc put her in the big bed where she napped for a good long while. She's now playing with Reo and her toys. It feels so, so good!

I'm processing some things; people I've met, things I've seen, things people have said to me. Like virtually everything I write, thoughts percolate for days and days slowly dripping into, hopefully, thoughtful discourse that I send on to you. Right now, it is 4 o'clock, well after 5 pm for my east coast friends, which means I'm going to pour myself a nice glass of wine and relax. I rested very well last night, but I still feel tired. Right now my fatigue has everything to do with my emotional armor slowly being peeled away. It is a heavy load to carry day in and day out.

I cannot thank you enough for riding this day with me. I've been flopping all over the place and took you with me. It has been extremely comforting to know that you're there. I raise my glass to you and to Aria! ~j