Aftershock
At church today, everybody wanted to squeeze Baby E's cheeks. They look so rosy and cute with that rash on them, don't they? Ugh.
After about the third time I started telling people, "Don't touch her face, please" if they even looked like they were thinking about interacting with her. The rash was lighter and less noticeable, and had started to crust over by that point, but it can't have been comfortable to have people pinching and squeezing it.
I don't know why people do that to kids. Has any kid in the history of the universe actually liked having their cheeks pinched? I doubt it. Yet adults who should know better keep doing it, even though they probably hated it when they were a kid themselves.
I did put an allergy alert bracelet on Baby E, and let her go into the nursery. The same people were working as last time, and remembered Baby E and were quite prepared to takee precautions. They used safe snacks provided by me for all the kids in the room.
Nobody complained about it, especially after I showed them the rash on Baby E's face and explained what happened on Friday.
Today I've been feeling a bit overwhelmed by the enormity of Baby E's allergies.
#############
Now that I know her swelling and rash on Friday were not a normal side-effect of the anesthetic or procedure, it scares me. It's almost the feeling you get when you realize minutes later that you were nearly in a car accident, even though you weren't aware of it at the crucial moment.
With facial swelling, swelling of the tongue and perhaps the throat, and a rash of that severity and quick onset, it could have been a really dangerous allergic reaction. She was congested and occasionally coughing for more than 24 hours after the procedure. I know some of that is a normal side effect of the anesthetic, but I don't know whether the extent and duration of it is normal or not.
I'm so very glad that we worked so hard to keep her from being exposed to any other allergens. Even just something small could have pushed her overall allergen load to a level where she would have been in real trouble. With her face and perhaps her throat and airways already swollen, it probably wouldn't have taken much to cause respiratory distress or other severe problems.
It could have killed her.
That's not something I like to think about, but that is the reality of our life.
We really need to find out exactly what she was reacting to, but I'm not sure that's possible. In order for that to happen I would need someone at the hospital to either be very proactive and detailed about researching it themselves, or to give me the exact brand and product names and manufacturers of everything that touched Baby E during the endoscopy.
I'll call the nurse practitioner on Monday. If anyone would be able and willing to do that or find someone who could, it would probably be her.
An allergic reaction is such a tiny step away from Baby E at any moment. Even at home I can't completely protect her.
Tonight Baby E found a small piece of play dough one of the older girls had left in the playroom. They aren't supposed to play with it unsupervised, but one of them had managed to get the container open and gotten it out. Baby E found the lone piece that DH had missed when carefully cleaning it up. She put it in her mouth and sucked on it briefly before I caught her and took it away from her.
I didn't know what was in it; there are no ingredients listed on the Veggie Tales Silly Squishy Dough Kit container. But I knew it was likely that it contained some ingredient derived from one of her allergens. The chances had to be at least 10 to 1 that it would have something corn- or soy-derived in it.
I took off her clothes so I could more easily monitor for rashes, made sure I knew where the Benadryl and epi-pens were, and waited.
The reaction wasn't long in coming. Within minutes her cheeks had reddened again and she was sprouting a crop of tiny blister-like red and white bumps all over her belly.
It hasn't seemed to bother her much, but it's nerve-wracking all the same.
I can make allergen-free play dough, and will probably do that tomorrow. But I probably can't make the house completely free of all Baby E's allergens, all the time.
Is it fair to ask the rest of the family to brush their teeth with baking soda (or with nothing at all) like Baby E and I do? Can I ask DH to never bring soda pop into the house, ever? Should I refuse to allow a newspaper in the building because the ink is soy-based? What about glue and tape with adhesives that are most likely corn-derived? Waxed paper and paper plates with corn-derived wax on them? Toilet paper and tissues packaged with plastic, sure to be dusted with cornstarch? Even crayons and markers are made with corn and soy derived ingredients.
I can't put Baby E in a bubble for the rest of her life. We have to balance the benefits and risks and constantly make decisions about quality of life for everyone in the household. We try our hardest to keep Baby E safe with household rules like keeping food and beverages in the kitchen. We make a point not to have in the house anything crumbly or drippy with enough allergenic ingredients that a small amount would give Baby E a bad reaction. We do our best to keep her safe.
But we never know when she's going to have a reaction. We never know whether that reaction is going to be relatively benign, or when it might turn deadly.
If I didn't believe that Baby E is in the hands of a loving and sovereign God who has a plan for her life and for our family, I don't know how I would keep my sanity.
After about the third time I started telling people, "Don't touch her face, please" if they even looked like they were thinking about interacting with her. The rash was lighter and less noticeable, and had started to crust over by that point, but it can't have been comfortable to have people pinching and squeezing it.
I don't know why people do that to kids. Has any kid in the history of the universe actually liked having their cheeks pinched? I doubt it. Yet adults who should know better keep doing it, even though they probably hated it when they were a kid themselves.
I did put an allergy alert bracelet on Baby E, and let her go into the nursery. The same people were working as last time, and remembered Baby E and were quite prepared to takee precautions. They used safe snacks provided by me for all the kids in the room.
Nobody complained about it, especially after I showed them the rash on Baby E's face and explained what happened on Friday.
Today I've been feeling a bit overwhelmed by the enormity of Baby E's allergies.
#############
Now that I know her swelling and rash on Friday were not a normal side-effect of the anesthetic or procedure, it scares me. It's almost the feeling you get when you realize minutes later that you were nearly in a car accident, even though you weren't aware of it at the crucial moment.
With facial swelling, swelling of the tongue and perhaps the throat, and a rash of that severity and quick onset, it could have been a really dangerous allergic reaction. She was congested and occasionally coughing for more than 24 hours after the procedure. I know some of that is a normal side effect of the anesthetic, but I don't know whether the extent and duration of it is normal or not.
I'm so very glad that we worked so hard to keep her from being exposed to any other allergens. Even just something small could have pushed her overall allergen load to a level where she would have been in real trouble. With her face and perhaps her throat and airways already swollen, it probably wouldn't have taken much to cause respiratory distress or other severe problems.
It could have killed her.
That's not something I like to think about, but that is the reality of our life.
We really need to find out exactly what she was reacting to, but I'm not sure that's possible. In order for that to happen I would need someone at the hospital to either be very proactive and detailed about researching it themselves, or to give me the exact brand and product names and manufacturers of everything that touched Baby E during the endoscopy.
I'll call the nurse practitioner on Monday. If anyone would be able and willing to do that or find someone who could, it would probably be her.
An allergic reaction is such a tiny step away from Baby E at any moment. Even at home I can't completely protect her.
Tonight Baby E found a small piece of play dough one of the older girls had left in the playroom. They aren't supposed to play with it unsupervised, but one of them had managed to get the container open and gotten it out. Baby E found the lone piece that DH had missed when carefully cleaning it up. She put it in her mouth and sucked on it briefly before I caught her and took it away from her.
I didn't know what was in it; there are no ingredients listed on the Veggie Tales Silly Squishy Dough Kit container. But I knew it was likely that it contained some ingredient derived from one of her allergens. The chances had to be at least 10 to 1 that it would have something corn- or soy-derived in it.
I took off her clothes so I could more easily monitor for rashes, made sure I knew where the Benadryl and epi-pens were, and waited.
The reaction wasn't long in coming. Within minutes her cheeks had reddened again and she was sprouting a crop of tiny blister-like red and white bumps all over her belly.
It hasn't seemed to bother her much, but it's nerve-wracking all the same.
I can make allergen-free play dough, and will probably do that tomorrow. But I probably can't make the house completely free of all Baby E's allergens, all the time.
Is it fair to ask the rest of the family to brush their teeth with baking soda (or with nothing at all) like Baby E and I do? Can I ask DH to never bring soda pop into the house, ever? Should I refuse to allow a newspaper in the building because the ink is soy-based? What about glue and tape with adhesives that are most likely corn-derived? Waxed paper and paper plates with corn-derived wax on them? Toilet paper and tissues packaged with plastic, sure to be dusted with cornstarch? Even crayons and markers are made with corn and soy derived ingredients.
I can't put Baby E in a bubble for the rest of her life. We have to balance the benefits and risks and constantly make decisions about quality of life for everyone in the household. We try our hardest to keep Baby E safe with household rules like keeping food and beverages in the kitchen. We make a point not to have in the house anything crumbly or drippy with enough allergenic ingredients that a small amount would give Baby E a bad reaction. We do our best to keep her safe.
But we never know when she's going to have a reaction. We never know whether that reaction is going to be relatively benign, or when it might turn deadly.
If I didn't believe that Baby E is in the hands of a loving and sovereign God who has a plan for her life and for our family, I don't know how I would keep my sanity.
Copyright 2009. All rights reserved.
Posted by purple_kangaroo at 10:35 PM[Permanent link]
9 Comments:
(((P_K)))
You are doing an amazing job at keeping Baby E safe!
((((PK))))
Some of this will get easier as Baby E gets older and stops reflexively putting things in her mouth. But right now is about as tough as it gets. You have my overwhelming sympathy.
I sometimes wonder what my family life might have looked like if someone had been as protective of my grandmother (who died of an allergic reaction while in the hospital for tests) as you have been with Baby E. You are a hero, I think.
I'm truly sorry to read about this fraught and trying time for you, Baby E and your family.
Regards - Shinga
((((((PK)))))))
What Phantom said about this period of her development. It will get easier as she has less desire to just eat everything.
I think that during this time you can and should ask the rest of your family to brush with only baking soda and not bring pop into the house. I think it's perfectly reasonable for you to tell the older girls that they can color with markers and crayons only in a certain space and only on clean newsprint (not newspaper) that you can clear away. And that they have to put their markers away immediately.
Soon the need to watch over every crumb and splatter won't be as urgent, but she's on the floor and she's picking everything up.
Biggest of big hugs and lots and lots of sympathy. I wish I could make this burden easier for you.
(((PK)))
Baby E is lucky to have such an attentive, caring mother!
Thanks, everyone.
Phantom, thanks for sharing that about your grandmother.
Liz, I talked with DH about it and we are in the process of setting up more stringent guidelines for what subastances are in the house and how they are handled. I wish it was an overreaction, but the more allergic reactions Baby E has the more clear it becomes that we can't be too careful.
You gotta do what you gotta do.
We have an autistic teenager. We have locks on all the doors and many of the cabinets. We have combination deadlocks on our front, back and side doors that lock from the inside, so you have to know the combination to get out. We joke about it being the burglar trap - burglars can get in but they can't get out.
All my hair stuff, shampoos and lotions and potions, vitamins and meds, toothbrushes, toothpaste, everything in the bathroom is locked up.
When my daughter was small, everything that kept our autistic son out kept her out too. She had to ask a grownup to get her a drink until she was about 12.
I still have to ask my husband to get simple things for me, because now my son is taller than me and many things, such as kitchen cleaner and coffee creamer, have been put up too high for me to reach.
Sometimes I get tired of having to unlock a cabinet every single time I want to add oregano to the soup. Sometimes I feel like I'm asking my other kids to grow up in a prison.
But we are doing what we have to do to keep our boy safe and sound and give him the best chance of having a good life. Mostly, we do most of it now without thinking - it's only when the plumber stands helplessly in front of the door because he can't get out to his truck that I remember that things are a little different here.
You're not hurting your family by taking care of Baby E. You're showing them right living and good priorities.
And, I remind myself, as annoying as it is to live with these restrictions, how much worse must it be to be the one who needs them?
Teri, thanks so much for sharing that perspective. It's immensely helpful.
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