Urban Dictionary lists the definition of Epic Fail as this: Complete and total failure when success should have been reasonably easy to attain. There could be no better title for this post.
Since we have been back from Emma's appointments in Winnipeg, she has been doing fairly well health-wise. The problem we are facing right now is equipment challenges.
Emma had issues with her hospital bed. She is starting to move herself around her bed and even with the body pillow in between the mattress and the railings, she managed to kick the pillow onto the floor and get her legs through the railings. She is a very strong girl and she ended up with bruises from the railings. As a mother, I would think this would be a very strong concern for her. Her team of workers did respond quickly to address the issue. We decided on a Posey Bed. It would allow Emma the freedom to roll around and not get hurt. This was November. It is now February. Her hospital bed is gone because it is unsafe and she is left with a mattress on the floor. No approval for a bed, nothing. Do you think CDS has followed up to see how we are making out? Nope. It baffles me how some organizations say they are all for the kids and at the end of the day, do they really care? I have been working with her team from the hospital to get outside funding from an organization for a bed for Emma.
Being without an elevated bed may be no big deal for some of you. It is a huge deal for us. Emma requires elevation while feeding. Her morning feeds were always in her bed while she slept, as her bed could give her the position needed. After Emma's bath, dressing her was on the bed at my hip level. I also used a Hoyer Lift to get Emma in and out of the bath. Now that the bed is gone and dressing her has moved to the couch, the Hoyer lift does not go to the couch. The sling has been retired for quite some time, collecting dust. I have been lifting her everywhere she needs to go, without the safety of the sling, which is against what her therapists have recommended.
Last Friday, Emma was in her wheelchair having "lunch". I grabbed the laundry basket and off I went downstairs to switch loads of laundry. Emma's oximeter started alarming full tilt, not just the regular alarm, and she screamed like I had never heard her scream before. I bolted up the stairs into the living room to find her hanging by her neck in her wheelchair, choking. The chest belt she had on, the zipper had split and she ended up literally hanging in her chair. This matter was brought to the attention of Emma's workers back in November when they were all here for the bed, and I never received any response back from any of them in regards to the seat belt.
As of today, the only thing I have for Emma to sit upright for feeding, etc., is a floor sitter, made by RCC. I do not by any means feel that this is a safe piece of equipment either, but we have to make it that way. When she first received it, she had ripped the Velcro tape right off by stretching out her tone. Keep in mind, this is a piece of equipment made by specialists who deal with special needs daily, it is their "specialty". I stress this fact because you would think their equipment would be safe and they of all people would understand what our children need. Emma's PT here ended up taking it to the hospital here to get things properly attached and secured for Emma.
Right now we are still awaiting approval for a bed, a Chill-Out chair and possibly a new wheelchair. I cannot hold my breath waiting for CDS to approve anything anymore as they just don't have the funds (so I am told).
The plan yesterday was for them to start tweaking things on her wheelchair again. I explained to them my feelings. It has not met her needs for quite some time and what is the point of all these adjustments if it is only going to work for another month, maybe 2? Her wheelchair right now is put away and will only be used if absolutely necessary. When I think of putting her in the chair, I instantly get panic attacks, shaking and nausea. Seeing her in the chair the way she was Friday is something I will never forget and I don't think Emma will either.
Since Friday, I have taken Emma to her pediatrician. He says her neck muscles are fine but her right gland is a bit swollen where she still had a red mark. She ended up with only a very tiny bruise on the back of her leg and a bit under her chin. She has a bald spot on the top of her head, called Alopecia...brought on by stress/trauma. She has been very jumpy to the touch but is improving. As a mother, I feel like I have failed her. I have one job, and that is to protect her at any cost and I didn't. I still can't.
I am at the hands of CDS. My daughter's well being is at the hands of CDS. If they say "No", she is the one that suffers the consequences. When you have a child with a terminal illness, you expect to fight and you expect it to be very stressful. You do not realize that most of the fight is to get what your child needs to have a comfortable, safe, stress free environment Unless you can afford to pay out thousands and thousands of dollars on equipment, you get the life CDS says you can have.