Grace for Rett » Grace's Life with Rett Syndrome

Barf Scarf

 

Click to watch the infamous Familiy Guy barfing scene. I cry tears watching this. 

Grace has weeks where she throws up multiple times in the day and night. It’s a mystery. She’s happy, chatty, no fever, not sick and then -BLEEEEEEH!!!!- it’s, like, EEEEEEEEverywhere. The other day, she threw up in the car on a roadtrip and we had no choice but to drive the next hour until we could get to our friend’s house and bathe her. She continued to vomit and, poor boys, her brothers were utterly mortified. Jack got sprayed a bit and now, he will only sit in the front seat when she’s in the car. Can’t blame him.

The past few nights, she’s vomitted multiple times in her sleep. Sometimes we catch it, other times, she doesn’t make a peep and we just discover it in the morning.

It all sounds quite horrific, but she’s still laughing, smiling and happy. And that’s the measuring stick I use when deciding if I’m gonna freak out or not.

Grace in her barf scarf

Why does she have these periods of puke? I just think she just gets reflux once in a while. We have a family history of dairy intollerance. I’m mostly dairy free and I have the odd cheese here and there, but every so often, my body reminds me why I should be completely dairy free because I get horrible pains in my stomach, reflux, bloating…the works. Grace’s diet is heavy on dairy because it makes things creamy and edible and provides easy calories. When she has a tube feed, that’s dairy as well.

Also, in the winter she gets a bit bunged up with phlegm and doesn’t have the physical ability to do anything with it. So she coughs –> gags –> vomits. And this is how she clears her chest. It’s not even vomit – just congestion.

But vomitting in itself isn’t what this post is about. I want to tell you a few tips for handling a lifestyle of vomit.

Layers. When Grace is having a puky week, I dress her in layers that can simply be stripped off in the event of a pukisode. I have to catch it fast, though, or it permeates the layers.

Catch it. Literally, I catch vomit. I keep her near me when she’s likely to vomit and as soon as she coughs, I bowl a towel under her chin and catch. Makes for quite an exciting challenge. They should add it to those crazy asian gameshows. Eat a cockroach, catch some vomit.

Barf scarf. It’s a heckuva lot easier to wash a scarf than clothes. So I wrap Grace in a scarf on a barfy day. This also protects her harness on her wheelchair which is pretty hard to go without while it sits on the radiator drying. Just whip the scarf off and throw it in the wash.

Gaviscon. I give her child Gaviscon in her PEG tube when she’s having a rough week.

Bedtime. At night, I cover her pillow in a fleece blanket (things don’t soak through fleece as easily) and lay a blanket over her sheet. I keep her hair up. This doesn’t really make it too much easier. We still have to bathe her in the night or morning, but at least we don’t have to wash her pillows or completely strip the bed. And she smells good after her multiple baths!

Upright. She’s pretty much always upright, anyway. But she has a hospital bed so we prop her up a bit to sleep.

Laugh. If you don’t laugh, you cry. Apart from the moment she’s actually chucking it up, it doesn’t really bother Grace. The sight of Grace with a puke beard, laughing at me freaking out is all it takes to make me lighten up. If she’s not bothered, then I’m not bothered. She gets extra baths, the laundry gets done and I get to curse at Rett Syndrome a few extra times that day.

Do you have tips for dealing with your child’s vomit? Post them in the comments!

Scott L Vannatter - February 25, 2013 - 3:25 pm

When my daughter was little (crib) I fed her a bottle once and I am guessing she didn’t burp enough gas out of her system.
She lay on the bed, face up, and I remember a cylindrical column of milkish white as it shot about two feet up and onto me. Missed my face, but…oh well, you are right – she was okay, so was I.
Scott

Sara - February 25, 2013 - 3:29 pm

Sometimes when we travelled places that we needed Livvy to get there vomit free we dressed her in a painting apron. I know it sounds crazy but it worked. We had towels a plenty and a massive electric bill. Nothing seemed to help but I just comfort from the fact that she thought it was hilarious especially when it grossed her sisters out.

Rebecca - February 25, 2013 - 9:23 pm

I can almost relate – I remember the shock I felt as Deanna ( then 3 months old) vomited once and hit the wall that was on the OTHER side of the room from where we sat. about 11 feet away, projectile vomiting there is nothing like it. Her issue was also dairy. She is still reminded now and again what a BAD idea mildshakes are.
I have to tell you Elizabeth, we are very proud of you. You have kept your sense of humor in a very trying situation, and I love your practical approach to this issue. Your daughter is truely fortunate to have you for mom, and after spending some time with her here in the states. I think you are extremely blessed to have her. God Bless – We are praying for that cure!

Alice - February 27, 2013 - 9:15 am

Dear grace’s mum,

I read your blog all the time. my friends’s daughter has also rett.
My two boys have reflux and one of them is allergic to cow milk. The 1 1/2 old boy (Marc) has also motion sickness so we practically cant take him by car even for a 10 min of driving. but sometimes we have to (going to the doctor,…). so here some ideas to avoid having her vomit everywhere:
1- i always put him a bib for babies made from hard or soft plastic and which has a pocket. It is easy to clean and while she is vomiting you can always hold the bib with your hand.
2- In Lebanon, no one care about the environment so we have lots of plastic bags. I use it a lot for marco. while he is vomiting i hold the plastic bag like if it is a plastic box. It is so easy to close and to throw.
3- Also plastic containers are helpful.

But if we are going to visit our parents (1 hour of road) we intend to leave our apartment when it is marco’s nap time.

Finally, no words can explain how much I admire what you are doing for your daughter.

Joyful Dysfunction - July 8, 2013 - 2:52 am

OK no vomit yet. Well hopefully ever. But just wanted to say we’ve got plenty of saliva and a scarf (as opposed to a bib, which is what I’ve been using) is an excellent and infinitely more stylish idea. I have three kids, Jordan (MPS IIIB), Mitchell (neuro-typical) and Olivia (Retts). Olivia is three now, just diagnosed, and I’ve grown her baby bob and fringe out – she looks a lot like Grace to me. Wish I could show you. Anyhoo check out my site http://www.joyfuldysfunction.com because I love the way you write and would love to stay in touch and figure out “what next” based on Grace’s adventures! V XXX

F a c e b o o k