Here's the low down on what's going on in the Cary household.
Ridge has been having a rough go of it. Black is back, and he threw up once yesterday. Hemoglobin doesn't go up more than 1 gram after transfusing, and we're used to 3 or more grams. They aren't giving him a lot of blood, which is also a little annoying. But there's probably a good reason, but I know he's received more than this much before....After transfusing, he is dropping his hemoglobin rapidly again. Today, however, even though his transfusion only took him from 7.9 to 8.9, and his first morning lab he'd already dropped to 8.5, he has stayed at about 8.3 all day, which is new. His pneumatosis intestinalis is back but didn't get worse from yesterday to today...this is still concerning, however. If he does not stop bleeding, and if the pneumatosis gets worse...or maybe not and, maybe OR...he will have to be NPO (no food by mouth) for 1 to TEN days and on IV antibiotics and increased octreotide.....scary times, friends. we don't wanna go there.
Sawyer is sick with a 103 degree temp and a sore throat. My throat has also been sore, but I have a gigantic ulcer I think to blame on the upper inside of my cheek. I also had some bad tummy bug or ate something wrong yesterday and was sick through the night and part of the morning. Just awful.
Today at school, a lot of teachers, as well as Sawyer's class (which he couldn't attend bc of his outrageous fever), all wore their TEAM RIDGE shirts. A friend sent me some pics via email- it was good to see.
I have had a hard time being separated from family this go round...all 4 of us should be together, no matter where we are....and it is hard that we are all sick except brandon and we can't really be together. I've definitely had some meltdowns in the last couple of days. Meltdowns for missing Sawyer and missing Brandon, and missing being home and being normal. Meltdowns for having to live with this in general. I know we have friends and family who will do anything we ask of them, so this next statement won't sound logical...but this road is so lonely. We are blessed with people who pray for us and with us. With people who would, and do, take care of Sawyer, or bring us meals, or do pretty much anything we ask. With a community and with coworkers who rally behind us. But it's still lonely, because for all of you good listeners out there, I know that even though you try and even though you want to, you can't understand how this all feels. If that sounds unappreciative, please know that isn't how I mean it- you bend over backwards to love us and to be an ear for us, and to let us cry on your shoulder or yell or vent and you are understanding. And I couldn't make it without being able to have these meltdowns to some of you. I just know that before living through this, I didn't know a family's pain and desperation in situations like this-- yes, I hurt for them, prayed for them, and would've done whatever they asked of me. But I couldn't feel their pain. And I guess, I am grateful that most of you can't. It's hard enough to feel this for my child. I guess I wouldn't want to have to feel this despair (at times) for every hurting family- it would be too much to handle. Anyway, it still gets lonesome. But for all of you who go the extra mile for us, know you make it much more bearable.
Music has always been able to speak my thoughts better than I myself can speak them. Tonight, as I was driving back to the hospital, I heard this song, which I'd heard a bajillion times before but never really listened to. Totally how I feel right now. Verbatim. So I will leave you with the lyrics, and I will change my playlist so you can hear it.
Thank you for the love. Thank you for the prayers. Thank you for being givers of hope for us in moments of my lackluster faith and my despair. You are Ridge's cheerleaders, and we couldn't walk this road without people like you.
xoxo
Hold My Heart, Tenth Ave. North
- alisha
- wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
1 comment:
Alisha,
You don't know me. I saw your beautiful family on Chris Copelands blog. I hope I am not intruding but you have touched my heart with your stories of your family and all that you are going through. I just want to tell you that your family is not only beautiful but awe inspiring. You seem so strong, and even though you are struggling through some very tough times right now you are still staying in and fighting the good fight. I believe you will make it through with flying colors.
I am a firm believer in the power of prayer and with your support system you have so many speaking into Gods ear for you. This gives your family the best of odds, I just felt lead to tell you that you have many more praying for you and the family and baby Ridge than you even know.
Blessings to you all,
xoxoxo
chrystal
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