Space to Process.
Sitting in the doctors’ office yesterday I took everything in he had to say. I was fine. Later that day while in Lowe’s my phone rings, the Hospital setting up our appointment with the Infectious Disease Doctor, getting them registered. I was fine. Later on in the evening filing away the referral I will need for the new doctor in a safe place so it doesn’t get lost in the move. Before filing it I sit down to read it through…. Needs Antibodies… Hemoglobin infusions…Please treat. I took a breath in let it out slowly and filed it away for Monday. I was fine.
This morning I got in the shower and the steam was warm around me, and the sound of the water beating on my head, drowning out all other sounds. I was not fine. There in the silence of the beating water I broke down. How am I supposed to make the decision I’m going to be asked to make on Monday?
With out the infusions they have to continue to be sequestered not being in public not being around kids. The hope is they start producing the antibodies they need by age 4 or 5. But do you keep them from being kids for that long. Missing out on outside play, playing with their cousins, going to preschool to kindergarten. Infusions? Infusions will allow them to do all those things with out the threat of illness. However there are risks. Risk of rejection, side effects. The infusions are a three-hour IV treatment that they will have to go through once a month. The cost? We estimate it to cost around 500.00 a month our portion after insurance. Can’t afford that. But I’m trying not to let that be a factor in my decision. It’s sad that it even has to be a factor, when children need certain treatments.
I can’t help but be scared, the infusions sound like the perfect treatment and they probably are, but what happens when the treatment you are treating them with makes them sicker. What if they react? What if they reject? All these things worry me. In light of those risk I tend to want to just keep them sequestered. However deep down I know that’s not fair to them either. Oh what to do… what to do?
I’m horrible at making decisions. Deciding where to eat has been known to cause major stress in me. So how am I supposed to make a decision this big, this life changing, this important?
This morning I got in the shower and the steam was warm around me, and the sound of the water beating on my head, drowning out all other sounds. I was not fine. There in the silence of the beating water I broke down. How am I supposed to make the decision I’m going to be asked to make on Monday?
With out the infusions they have to continue to be sequestered not being in public not being around kids. The hope is they start producing the antibodies they need by age 4 or 5. But do you keep them from being kids for that long. Missing out on outside play, playing with their cousins, going to preschool to kindergarten. Infusions? Infusions will allow them to do all those things with out the threat of illness. However there are risks. Risk of rejection, side effects. The infusions are a three-hour IV treatment that they will have to go through once a month. The cost? We estimate it to cost around 500.00 a month our portion after insurance. Can’t afford that. But I’m trying not to let that be a factor in my decision. It’s sad that it even has to be a factor, when children need certain treatments.
I can’t help but be scared, the infusions sound like the perfect treatment and they probably are, but what happens when the treatment you are treating them with makes them sicker. What if they react? What if they reject? All these things worry me. In light of those risk I tend to want to just keep them sequestered. However deep down I know that’s not fair to them either. Oh what to do… what to do?
I’m horrible at making decisions. Deciding where to eat has been known to cause major stress in me. So how am I supposed to make a decision this big, this life changing, this important?
posted by Kate Michele at 9:46 AM
17 Comments:
Gurl, I'll say a prayer for you and the younglings.
I wish I knew what to say. I wish I could encourage you. This post is so painfully honest and moving. I know whatever decision you make will be the best one for your children. The only thing I hope is that YOU are able to feel that way.
My thoughts are with you.
oh sweetheart! first off, *hugs* you know that you don't always have to be "fine" - you have a huge support network out here that you can vent to.
you, chad and the doctors will make the best decision in the end. i know it's stressful but the boys are so grateful they have a wonderful mama like you...they called me and asked me to tell you that!
you're in my thoughts.
wish I could give you a big hug and a big sloppy kiss!
This is a decision I don't envy you, Katie. Sometimes, though - you have to take a risk if it will could them a better life.
Is there still the possibility of waiting until they are 4 or 5 and then doing this if they haven't started producing them naturally?
well i guess, but then they'd still have to be sequestered till then.
I'm so sorry you have to make such big decisions for your little ones.
Even though you want different choices there really aren't any. Money comes and goes but our children are our children. We do what we have to. Isolating your children in the long run if you ask me will do more harm than any injection ever could. But you're lucky they have each other. That's a bonus. You might have to strap a mattress to your ass girlie and start sellin' it on the corner to cover costs. LOL. I'm kiddin.
It's all going to be ok, you'll see. Kids are resilient...
I'm here for ya....hugs.
Geez, Katie. My heart goes out to you and the boys.
Kids and animals. The weak spots for me. They give. We give. Unconditional love, ya know?
I know your boys know how much their parents love them, and whatever you decide will be the best for them. Otherwise, you have to trust your doctors to know that what they are doing is right, too. That may be the easiest part. They are clinical, parents are emotional.
If it helps at all, you know that we're here in spirit, and if you need to draw strength from that, go ahead ... we can take it.
You'll do what is best.
It sucks having to be a grown up....Why we can't stay kids forever.
I wish i could at the very least give you a hug...
Take heart in the fact that you do have a great head on those responsible shoulders...Breathe and trust yourself.
One step at a time .. one foot in front of the other. You can still stop the treatment if it starts to appear harmful. One step and then review, next step and then review. Don't try to anticipate what you can't know in advance or you'll drive yourself mad.
Your heart will know what to do best for them.
Kate, what is their official diagnosis?
I'd like to look a couple of things up and talk to a pediatric PA friend of mine.
I've been in the Medical field for a long time and even though I'm strictly working in Medical Entomology I have some resources that might have some insight...
Be Good, chin up. You're doing an awesome job.
-buzz
By the way I see you've changed your profile pic. You decided not to go with the one of you picking your nose then huh? ;)
Mr. JOnes: that one your thinking of I used on my answer post..
Buzz: I don't have the spelling of the correct term..but their IGG levels are low causing them to get infections very easily. The hope is it's transeit and they're grow out of it, but think they need a little help...hence the infusions. The infusions, from what I know so far, is an IV of synthetic Hemoglobin. 3 hour treatment once a month to up their IGG levels to normal helping them fight things off and join the outside world.
Aw Katie, this just sucks. I can't even imagine having to make that decision. You just remember to take care of yourself through all of this. Us moms tend to put ourselves at the bottom of the list.
On a positive note, your new picture is stunning.
i can't even imagine making that decision.
my heart goes out to you, sweetie.
hang in there, girl! i know this will all work out just fine. kids are so amazingly resiliant! as for them having to be away from other kids, at least they have each other, ya know? are they allowed to at least go outside if no one else is around? is the fear that they will catch an illness?
i'm thinking of you all.
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