Monday, January 6, 2014

Life In the Cast Lane

Please note the title of this post. I am pretty proud of my genius ;o) In all seriousness, here is what our life has been like with the spica cast.

First off, here's what we are dealing with here. This is a picture of the x ray from Mac's last orthopedic appointment. The (spiral) fracture is behind the staples in the cast.

Let me back up a bit... Paisley hadn't seen Mac- other than a quick facetime conversation- since school that day. I took her with me when Mac was being discharged. The first thing she did when she walked in his hospital room was run to the bed and try to climb in as she yelled 'Mac!! Mac!!' In return, Mac said, 'Sissy! I missed you!' She crawled on the bed but stopped at the cast. He was (is) apprehensive anytime someone got near the cast so he puts up a stiff arm and yells to stop. Paisley listened. That was a sweet twin moment. She had her brother back. Those were the first nights they ever spent apart, and Paisley looked in his bed and asked for him every.single.nap and night.
The first night home Mac cried for several hours. We had all gone to bed, and Jordan was with him in the den. My mom stayed in my room to be near the monitor should Paisley wake. We had juggled beds and who to put where so that Mac would be catered to and comfortable. We decided that an air mattress would support him while also molding to his awkward cast position.
We have all adjusted to the cast and it's monstrosity. It's pretty overwhelming. I was overwhelmed by the diaper changes and care of the cast. We were warned it would smell really awful before too long. Fortunately Mac's internet research savvy Mimi hopped on the issue at hand and found us great tips for keeping it sanitary. For one, we sponge bathe him every night. We can't wet the cast, but it's bound to happen so we dry it with the hair dryer on cold. We dry every spot of that cast. Then we use a makeup brush to apply a corn starch and baking soda mix. This method must be working because we are 24 days in without a stench.
Mac and Wells get sponge baths together.
Next we were concerned about his well-being. That's not such an easy fix. We've purchased and borrowed special pillows to support him. He can't sit up all the way, and laying down all the time is terrible. We prop his legs up with pillows and blankets to support the position of the cast. There's also the issue of skin breakdown so we rotate or adjust him at least every 2 hours. Now that we are a few weeks into it he's becoming more secure with laying on other surfaces. We've even managed to sit him up while one of us completely supports him in a chair. He loves it, and even though my arms and hands are asleep, I will hold him so that he can enjoy playdoh with his sisters.
The reality of the cast stinks. Honestly. We are blessed that he has had amazing care. We are grateful, but we are also living this reality. He's temporarily limited. He doesn't understand it. He fights it several times a day. Just last night he had an episode over not being able to get in the bath. He's cried and begged to get in the bath for a week now. It breaks my heart.
For the most part nights are rough... brutal. Mac wakes up screaming several times a night. I think it's pain and insecurity. Plus the fact that he can't move. When I say he screams, he literally belts out a shrill sound that wakes anyone who isn't used to it. He flares his arms and slaps his legs. He screamed so hard (6 hours) one night that he had no voice the next day. Nothing comforts him. In the midst of this, he has huge tears streaming down his face. I can't let him see that I am also crying. I can't do anything for my baby, and he hurts too badly to let me hold him. When I get too close he slaps me or pulls my hair. Nothing can calm him. I can't even accurately describe what these episodes are like. He does them until he exhausts himself and basically passes out.
This is pretty much the only way he will sleep for any length of time. He wants to be held. Mac is such an affectionate person, and the cast is awkward and heavy to hold. He often raises his arms and says 'hold you' to get quality cuddle time
.

If you know Mac, you know this isn't him. He is the sweetest, softest boy I've ever met. Sure, I'm biased, but it's also truth. He is a gentle, cautious spirit. He is so laid back. This child didn't walk until he was 20 months old because of his laid back nature. It's who he is. Seeing this tantrum he has displayed turns my stomach and melts my insides.
Jordan nor I can leave him for any length of time. When I'm able to sneak away for a shower or a quick errand, he asks for me constantly. Sometimes he starts an episode while I'm gone. (I refer to this behavior as an 'episode' because I'm not really sure what else to call it...) He asks for one of us in his presence at all times.
In all the lows, Mac still loves his cars. We love that he still wants to play :)

 When my dad visited recently, he walked outside with Mac for TWO HOURS. He later said his biceps felt like they had run a marathon. What a champion Paw Paw is for Mac's happiness. Because that sweet boy wanted to be outside. Mac was on cloud nine. LOOK at that smile!

We have the wheelchair, but it scares Mac. He isn't a fan, but we want to get him out when possible. Jordan proposed using our Britax stroller, and it actually works pretty well. He can't sit all the way back, but we support his back with blankets and pillows so he can be comfortable.


With a newborn who has to be fed every 3 hours, Mac turned every 2, Paisley who is trying to find her place in this picture, and LS who also has needs, we are pulled a million directions. I can't do the daily stuff by myself. It isn't fair to me or any of the kids. Mac requires constant adjustments as well as his essential needs. One being the duty of making him eat and drink. Because he isn't active he doesn't have an appetite. We are giving him supplements to help with his weight loss. We can put our whole hand down the torso of his cast now, and his rib cage sticks out over it. My chunky monkey has taken a hiatus, but he WILL be back.

This week Uncle Jeff has come to visit. Mac loves his 'Jeff'.


My mom has been here every chance she could. She has taken loads of vacation to be here to help cook, clean and keep the kids. She never hesitates to change a diaper or scrub a toilet. I can't thank her enough. 

Mimi spent a week with us after the incident. She prepared dinners and stayed with the kids so I could run an errand or pick up and drop off Lilly Scott at school. My dad and Uncle Jeff were also huge help with school travel. 

Our friends and family have brought meals for us. We SO appreciate this blessing as eating is the last thing on my mind. It has been so helpful that the kids could be nourished when I am unable to complete a thought.

We go back to the orthopedist January 20.
Hopefully we will have the cast off sooner rather than later.

Thank you for reading. Thank you for caring. Most importantly, thank you for praying.

-ashley

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