Change of Plans

It looks like Mackenzie's cast might be coming off sooner than we thought.

Last night Brice was playing with Mackenzie on the floor and when he picked her up he thought he heard/felt a "pop".  He wasn't sure what it was though.  Maybe her cast shifting positions slightly?  Then, a little later in the evening Mackenzie was in her sitting position that we can't keep her out of now and I noticed that her leg was turning purple.  She must have been cutting off circulation or something of that sort due to the pressure the cast was putting on her thigh.  Again, not quite sure what caused it.  We monitored it quite closely and it didn't seem to be ongoing.  Also, she was quite cranky yesterday.  That could have been attributed to quite a few things: she is teething again, she has cut out one of her daily naps now that we are back at work and she is doing to the babysitters, and also, she is in a full body cast.  We feel so conflicted because any time she is unhappy we always wonder "does it have to do with the cast?".

So, last night we sent off an email to our surgeon's amazing secretary and asked her what we should do.  He only sees patients in the clinic on Tuesdays.  So with this being a long weekend, we would have to arrange an appointment for this coming Tuesday with very short notice.  She called me this afternoon and said she had shown him our email with our concerns (and a lovely picture of how Mackenzie likes to sit).  And he decided that he probably should see us sooner rather than later.

So now, instead of September 11th, we will be going up this Tuesday, September 4th.  We were told that they will do an x-ray first, but since the cast is supposed to be removed the following week they will likely just take it off while we are up there.

We are excited that the cast is most likely coming off a week early, but also worried and hope nothing major is going on and everything will be alright and there will be no negative consequences to taking the cast off earlier than projected.

Sleep and the Spica Cast

When we left the hospital with Mackenzie in her first cast we were told that we should be waking her up every 4 hours or so to check her diaper and shift her position.  I asked around on a few different DDH forums and the consensus seemed to be "don't wake a sleeping baby!".  If you remember from the post when we first got home, that first night it was no problem.  She wasn't doing much sleeping anyway.  However, after the first week or two she thankfully settled back into her 12 hour nights.  We have never woken her up at night.  We have only had one diaper leak at night and it was nothing too major, and no issues with soreness from the cast.  We figure if she had a pressure point bothering her, or something of that sort, she would wake up anyway.

Sleeping in the crib

Here is how we position her for sleep:  In her crib we propped up one side of her mattress with a few rolled up towels.  This was just to give it a slight angle so that if she did have a diaper leak at night it would drain down instead of up into the cast.  A regular sized pillow was put in her crib for her to lay on from her lower back up.  And a rolled up towel was placed for support under her knees.

Towels under the edge of the mattress

Just a very slight incline at the left

Pillow and towel placment

Sleeping with Daddy.  All you need is a pillow and a rolled up towel.

Sleeping in the Pack n Play at Nana and Papa's - same set up with the pillow and towel

This arrangement has worked for us no matter where we are.  We set up the pillow and towel in the pack n play, or on the bed in our trailer when camping.  The nice thing is everyone always has a pillow and a towel you can use for her to sleep.

Cast Check - 9 weeks down, 3 to go!

We went up to Edmonton yesterday for our cast check for this second cast.  We jokingly, but sorta seriously, asked the doctor to take the cast off.  He said no dice though, needs to stay on for another 3 weeks to make sure it can work all of its magic.  It will definitely be coming off on September 11th.  The countdown is on.

The visit was kind of frustrating.  Everything was fine with the cast.  Therefore, we had to drive an hour and a half to Edmonton and we ended up waiting for over 2 hours in the waiting room before we saw the doctor for about a minute and 37 seconds.

He said "the x-ray looks weird",  due to the angle she was laying for it with the cast.   He also told us that she will most likely be put back in one of the diaper splints after the cast comes off.  He wont know for sure, or how many hours a day that will be for until he gets a good x-ray after the cast is removed.  I also asked about Physiotherapy and his exact words were "I don't want anyone touching her".  Nice.  He later clarified that he meant until he is finished his treatment.

We asked to see the most recent x-ray, as we always do.  And he was flipping through a few of the older ones and made the comment "this is where it was dislocated".  I was confused because we were never told it was dislocating.  In fact, on our first visit I distinctly remember him saying "It's not a normal hip, it's not dislocating, but it's not normal".

So, three more weeks to go and we will be done with this cast.  I just pray that this will be the end of the journey for us and no further surgeries will be needed later.

Her new favorite thing to do is to sit like this. Can that be comfortable?!?!?

Scowl face!  This means "I'm having fun" 

How I Feel About This Waterproof Cast

I HATE it.

I asked the surgeon before she went in for the cast change about the waterproof cast and specifically whether it was equally as comfortable.  He assured me it was and he recommended it.  In fact, he said, you can completely submerge your child in a bath or the pool.  Sounds great!

When Mackenzie came out of the O.R. she was upset pretty much until we left.  I was so happy to see that free leg and I didn't really care about much else besides comforting and consoling Mackenzie.  We rushed to get the cast pedalled despite the annoyance that the tape was not sticking at all.  Later I realized that the cast was likely still a bit wet however the nurse was the one telling us to pedal it, so we did.  I just wanted to get out of there.

When the Occupational Therapist came to check out our carseat situation I also asked her about the waterproof cast and any special care instructions that would be different than her first cast.  She said that while you "can" get the kids wet with no damage to the cast she would not recommend submerging them in water.  The concern would be whether or not the cast would fully dry out on the inside.  This was a concern I also had in the back of my mind so we made the decision that we wouldn't do anything differently than we did when she did not have a waterproof cast.  Sponge baths will continue for another 6 weeks.

The main difference with the waterproof cast is the inside and"stuffing" material of the cast.  Unfortunately it is really hard to get a photograph of the inside of the cast.  In her first cast the inside was cotton and it seemed to be a solid piece of cotton with a layer of "stuffing" between that and the fiberglass.  This cast the "stuffing" is almost a plasticy mesh type material that is long strips wrapped around.  This makes the pedalling terrible because the tape will just stick to one of the layers or pieces of this mesh and that can be moved quite easily.  Pieces end up moving, coming up out of the cast, and worst of all, allowing the tape to stick to her poor skin.

This shows how the tape and stuffing come out the top of the cast.

The inside layers stick to the skin and pull away from the fiberglass

We have also been having a more difficult time with diapering in this cast.  It's not the best for shoving the smaller diaper inside as it is not as loose as the first cast in that area.  We can just fit a size 3 or 4 (depending on type) around the whole outside but it tends to shift down off the cast onto the leg that is free and then can gap and we have had a few pee accidents leaking out of the cast.  At night we do the double diaper, but during the day we just make sure to change her frequently and adjust the diaper if it seems to be shifting.  We had a large blow out after she had been in the carseat and poop got up the back of her cast.  We cleaned it out the best we could and ended up cutting out part of the inside piece that we couldn't get clean and then just taping it back into place.  We are doing the best we can.

At the end of the day, I definitely would NOT go for the waterproof cast again if given a choice.  Given the fact that we still wouldn't get her wet.  There are no plus sides to the cast and a plethora of negatives.

Look What I Can Do!

Sorry for the bad phone quality, but I didn't have time to grab our camera.  Mackenzie has started pulling herself up on the stairs, window sill, whatever she can get her hands on. Then she cries because she gets sort of stuck in that position and can't get back down.  Crazy girl!  

What About Work?

This question came up on the DDH Facebook group I am a part of so I thought it might be worth while to do a quick post about what we are doing.

We are so blessed that I am still on maternity leave (until August 29th) and because Brice is also a teacher he only had three more days left of work before summer break when Mackenzie got her first cast.  Therefore we were both able to be home with her for two whole months during the cast time.  We will both be back at work though at the beginning of the new school year.  When we found out she would be getting the cast, we immediately started planning and trying to figure out what we would do when the time came to go back to work.

A few of our options were:

• take an unpaid leave from work so one of us could stay home with her until the cast came off
• have Brice's mom come out and stay with us for the few weeks in September that Mackenzie will still have the cast (she is a retired school teacher); or,
• send her to the dayhome that we had lined up already

It took Mackenzie probably about a week and a half to two weeks to get used to being in the cast.  At 9 months old she adapted incredibly well.  I doubt she even remembers what it is like to not be restricted by the cast.  After that week and a half to two weeks she got back to sleeping well and being back to her regular happy self.  If you are a parent who is not able to take an extended leave from work to care for your child in a spica I would suggest trying to take at least two weeks when they first get the cast.  

Especially now that Mackenzie only has one leg casted, but even before, we were so impressed with how well she was doing.  Diaper changes were not nearly the nightmare we expected.  She crawls around and plays independently.  She is honestly just her regular happy self.  This made our decision to both go back to work much easier.  

The original plan was to have Mackenzie's Grandma come and stay with us for the 2-3 weeks she would still be in the cast.  After that she would go to the dayhome.  However, with the ease of caring for her in the cast, we decided to leave the decision up to her day home provider about whether she would like her to start there from the get go.  She seemed to be quite willing to take her despite the cast.  We went and visited her the other day so that she could see what the cast looked like and how Mackenzie adapted with it.  She had done a bunch of research online as well, and like us was impressed with how well Mackenzie was doing.  She told us she would be happy to take her.  In fact, she seems more concerned with dealing with Mackenzie's dairy allergy than the cast.

So, rather than have Mackenzie have to make two transitions, first with Grandma and then to the day home, we decided to go straight to the day home.  We are hoping for the best come September!