October 15, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

We have had a relatively uneventful day. Annadelle has been awake most of the day but is finally resting now.

She had to endure another IV stick this morning because her doctors have introduced albumin and lasix. They are trying to cause her body to drain the fluid left over in her lungs by having it absorb back into the bloodstream and out through her urine (or at least that is the best way it was explained to me).

PT came in and moved her arms and legs around a bit. She wasn’t happy about that, but she’s not really happy about anything today so take that with a grain of salt.

I feel like I’ve been full of complaints since I’ve been here due to the number of mistakes that have been made by newer, less experienced employees – so much so that it has caused Chris extreme anxiety to where he has not slept for 4 days. We voiced our concerns with management but it does not seem to have done much good. I say that in order to preface this complaint that seems small, but appears to me that it could be a great tool to help her heal and that is the introduction of something they refer to as a shaker bed.

Yesterday, the RT and nurse Kelsey (we love her!) explained to us the benefits of putting her on a shaker bed. Basically, the bed vibrates and allows the secretions in her lungs to be knocked loose, making it easier to suction and get them out and also preventing further infection from having those secretions just sitting there. Kelsey made sure before shift change to make arrangements for us to receive one of the two beds they have that do this. There was another patient with that bed (not using it for its intended use) that was going to be moved out of ICU last night, so she talked to the charge nurse and requested that bed be given to us upon the other patient’s departure. When the new nurses came in this morning, they told us they were getting prepared to change her to that bed, but now suddenly they can’t find the bed. (Hint: The bed isn’t lost- it was taken with the patient who left the ICU and they still have it.)

I have requested this bed several times today from our nurse and from the two RTs that have visited today. I feel like I’m simply being looked over and this just adds to a number of mistakes or miscommunications that have occurred since we have been here. My mother says I should be thankful that we are here and that we owe them a debt of gratitude, and obviously I agree to that, but I have to be an advocate for my child and I am trying to do that to the best of my ability.

Anyway, if anyone reading this happens to know if I’m just overreacting and maybe this bed wouldn’t be as beneficial as I was previously told, please tell me.

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