2.19.2011

Cast Care... or Spica Changes Everything

10 days into caring for a baby in a spica cast and here's the summary of what I've learned:
Spica changes everything.
It's managable.  It just changes every thing we do.

I hold her differently (one arm between her legs for support.)
I'm cautious about positioning her to avoid blood clots & give her daily folic acid to prevent them.
We get up 3 times a night (11pm, 2am, & 5am) to do diaper care.
She has a specialized car seat.
The Baby Bjorn doesn't work anymore with her but I can modify my Ergo and also use a Moby so that I can carry her hands free.
She can't sit up and this is frustrating for all of us.
I have to be very cautious about foods I eat - little room for tummy expansion for her & immobile legs means that she could experience a lot of pain with gas or bloating.
I'm avoiding introducing her to new foods (don't want to risk reactions.)
She has to sleep with a boppy and her feet propped up./
Most regular baby equipment doesn't work - or has to be modified.
Nursing is kind of awkward.
Cast care is tedious and exhausting.

What hasn't changed? 
Her precious smile & contagious giggle and sweet disposition.

So, 10 days in & here is how we are currently doing cast care.
(Subject to change at any minute, of course, as we figure out new methods or adjust things.)

CAST COOLER
(aka:  Vacuuming Ellie)


Thanks to the blog reader who recommended the cast cooler.  It works with a vacuum and seems to work wonders at removing moisture & odor from Ellie's cast.  After about 3 days, it was pretty stale smelling.  Now, it doesn't stink & I think she must feel more fresh as well.
I highly recommend castcooler.com!
We do this 2-3 times a day for about 25-40 minutes at a time.
I do it on each knee, sometimes on her thighs, and on her bottom and tummy.


See?  She's happy.


My friend, Laura, in nursing school, came over & "vacuumed" Ellie this week.




INDEPENDENT PLAY TIME

One of our huge frustrations has been the fact that there is no way to get Ellie upright independently of us holding her.  There is no bend in the cast to allow her to sit in anything.  This has been frustrating for Ellie too.
Her bouncers don't work.  Her car seat doesn't work (we have a special kind made for spica casts.)  Her swing and high chair don't work.  Her bumbo doesn't work.  All those little things I didn't realize I depended on for putting her down for 20 minutes while I made dinner or tended to Will - they don't work.  And, at 6 months old, she is not content to just lay on her back flat on the floor for her wake times.  (She is not actually flat either - we have to position her using pillows & stacks of burp cloths to take the pressure off since she isn't fully flat.)
While expressing this frustration to her physical therapist a few days ago, she got creative (goodness knows my tired brain has no room for creativity right now) & turned this soft table thing upside down to make a little stand/holder/table thing for Ellie in a spica!

Ellie loved it!
(The downside is that it requires two people to get her safely into it.)
My mom & I got more creative after this & pulled the bucket seat out of her baby Einstein play gym, stacked pillows & her lamb on the bottom to support her & the cast, & (again with 2 people to do it safely), slid her from the bottom up into the thing.  She was a very happy girl & we were happy to see her so happy!
(Just a bummer that I can't do it alone.)


CLOTHES


The cast adds 10 pounds & changes her body shape so I've had to go up a size in clothing to fit around the cast.  Also, pants do not work which is frustrating.  Clothes must go on over her head so skirts work but only if they have a big elastic stretch band.  Onesies work kind of.  Dresses work great.  Baby legs also work.
Two women from church have graciously offered their talents to sew spica clothes for Ellie! So, they came to measure her the other day & are going to create a dress that will fit her in the cast just perfectly!
Precious!   
Lucky girl to get custom made dresses, isn't she?
Another friend sent an outfit called "Ellie Bear Spica Wear" (named after another Ellie!)  that is just adorable & soft & fits the cast perfectly & makes diaper changes easier!  She's worn it several times already this week.
Thank you, Susan!


DIAPER CARE

And now... how we do diaper care.

Setting up supplies:
waterproof tape, torn into short strips for petaling the diaper area 
She doesn't fit very well on her changing table (not enough room to really work there) so we set up a card table (classy, aren't we?) with a monogrammed pink quilt covering it of course, in her room.  The pillow under her head helps with support as otherwise her body is at an odd angle & her feet poke up in the air & that is not good.
(She has to sleep with her head on a boppy pillow for the same reason & her feet are propped up in her bed on stacks of burp cloths.  For skin breakdown reasons, we have to change her position periodically but nursing her makes this easy.)
Anyway,
the 3 drawers are filled with supplies (tape, moleskin, bandages, etc), diapers, & prepared Poise pads.
During a recent diarrhea nightmare, we used various utensils wrapped in wipes to reach into the cast as far as we could & clean her.
Don't worry, these no longer reside in my kitchen drawer.
They have a new home in Ellie's cast care drawer.


Only after a really stinky diaper do I use oil - organic lavender oil - rubbed on the edge of the cast with a q-tip - to help with odor.  
I've read that tea tree oil is good for combatting bacteria & odor as well.  I haven't used it yet as it is a rather strong smell.  I keep it on hand anyway because I use it in my homemade face wash and now it may have another purpose!

A flashlight is sometimes necessary to see inside the diaper & make sure we get all of what we need to get out of there.

During a long diaper change (we've had 2 that have taken 2 hours), entertainment is necessary.
Will or Daddy have taken on this role.


 I learned the hard way that using a hair dryer is essential.  We try to use it at every daytime diaper change.  It makes the tape last longer as it keeps that dryer & it helps keep her cast dry.  We've noticed a significant decrease in odor & it is also supposed to help with her comfort by taking away the itch.
We dry her on both sides.
We only use it on low and cool setting.



We found that Poise pads work better than maxi pads.  
(Yes, I just admitted to using both of those on my baby girl.  She'll be mortified someday, I'm sure.)
Her daddy is, I think.
He asked recently if I was embarrassed to buy Wal-Mart out of Poise Pads this week - I bought several hundred (we go through about 100 a week.)  
Nope.  Should I have been?
In the hospital, they had us using maxi pads but we also kept having leaks there.  With incontinence pads, we don't have leaks (except the diarrhea incident.  Forever more, I shall refer to that event as "The Great Diarrhea Disaster of 2011."  It was awful & required a call to the hospital to see if they needed to replace her cast - I simply can't get it out of the liner of the cast way down her leg.  Disaster.  Lots of tears  - more for me as I feel like some horrible neglectful mom that I can't remove poop completely off of my daughter's leg cast.  I hope this doesn't land her on a therapist's couch someday!
Anyway, Poise pads are too long so we cut 1/3 off & tape the end with waterproof tape.  I learned the hard way that taping is necessary as otherwise when it gets wet (from urine or sweat), the cotton inside starts to come out & then that gets wet & it is a huge pain to clean it off of her.
And by "we" I mean my sweet friends & mom who have put in time to cut and tape hundreds of pads so that it is one less thing for me to worry about & they are already done & prepared.
The Poise pad gets stuffed up inside the cast - front & bottom.
On top of that, I stuff a small diaper - front & bottom - as far as I can get it & as wide as I can inside the cast.
Flipping her over between stuffings is the worst part for Ellie girl.
The diaper area has to be petaled in waterproof tape.  This not only protects from the sharp edges of the fiberglass cast but helps protect the cast from becoming wet or dirty.  If it becomes too wet, we would have to travel to Dallas & put her under anesthesia and have it removed & replaced.  So, when the waterproof tape becomes soiled, I have to replace it in layers.  Sometimes, just from wear and tear of diapers & clothes, it starts to peel up so then it has to be replaced as well.  I don't do this step every diaper change - just portions of it about once a day/day and a half.  It takes a long time as it is a narrow workspace.
After the Poise pad gets stuffed in both the front & back, I stuff a small diaper in the cast.
Finally, we put a bigger diaper on over the whole thing & it's over at last...
until the next one 2 hours later.

the supply table & sweet Girl
this shows the moleskin on the top front of the cast.  There is moleskin petaled all the way around the cast to protect her (& us) from the sharp fiberglass.  It has to be replaced every 48 hours or so.


Getting the moleskin around her feet is very tricky.  Just a small workspace & it's really hard to get the moleskin under her toes.


A basic diaper change takes about 10 minutes.
It seems that about once a day we encounter a "hiccup" in our diaper care that requires much more time. Sometimes, I'm prepared for it and I've planned the time accordingly because I know it is time to tape & petal or moleskin her.  Then, I can plan on spending 45 minutes or so doing diaper care.
Sometimes, as with the "Great Urine Incident of 2011" or the "Great Diarrhea Disaster of 2011,"  it takes closer to 2 hours (or 2 hours and 13 minutes, to be exact.)  These, obviously, we weren't expecting & so that is frustrating when it is bed time, for instance, & suddenly 2 people are required to manage diaper care for several hours.  There may or may not have been a glass of wine poured recently during the GDD2011.  Just saying.
So, generally, cast care is manageable - just time consuming.  It's those unexpected daily hiccups that seem to get us & overwhelm us & exhaust us.
And, they offer us a unique opportunity to serve her.
More on that in a day or two (or three or four.)

Now, I have to go tend to a baby crying.  

9 thoughts:

Amanda said...

That is intense! The next time I want to gripe about changing Annabeth I'm going to remember this. When she was 15 months old we had to have her hips x-rayed for a possible problem. I looked online to research what would happen if there was a problem and it would have been surgery and a cast. People told me to stop freaking out but, like you said in the title, it would have changed everything. At least for a while. You are an AWESOME mama. I'm praying for your endurance and for God to give y'all lots of grace right now.

Claire said...

There is UK charity helps children with spica casts. They have instructions on building a spica chair here: http://www.steps-charity.org.uk/links/4-66-downloads.php?mode=docequiplib

Kat said...

I went through all this with a 9-year-old (also in diapers). Just hang with it, it gets easier. By the end of this you will probably have reevaluated some of your priorities and some of the things that really bother you now will not matter at all then -- and that's okay!

Erika Minich said...

Wow you must be besy. That was a really long post. So how do I get the reward???


Erika minich

Claire said...

Pretty spica pants! http://www.babyhipwear.com/

The Ruth Family said...

Hi! I ran across your blog before you had Ellie...and immediately wanted to know more....and wanted to make sure that your sweet little one was okay. I have checked on your family through your blog weekly! Just wanted you to know that I admire your strength and your grace. You have handled this in the most amazing way! I'm truly impressed! Thanks for being an incredible roll model to all mothers!

Ellen said...

My daughter will get her spica in a couple weeks. I am curious to know if anyone has tried colostomy bags around the rectum to contain stool.

Ellen said...

My daughter will get her spica in a couple weeks. I am curious to know if anyone has tried colostomy bags around the rectum to contain stool.

Unknown said...

My Ellie was in a spica in Feb due to a fractured femur. We were super lucky and only needed 3 weeks in it, and it was only down one leg. My diaper plan was the same with the incontenance pads, then a small diaper inside, then a big one outside! I got the cast cooler too, but it really freaked her out. I'm thinking it isn't meant to be used with a Dyson (suction too powerful maybe,)so I only tried it the one time.

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