The princess and the patient

It started after Bai got sick a little over a month ago, we saw how bad she struggles to clear mucus while laying flat. She spent days throwing up while choking on drainage in her throat and we fought to try to get her even a smidgen upright. A trip to the pediatrician for medications, and to express our concerns, ended in an order being placed for a medical bed. We got a letter about 2-3 weeks ago pending the decision requesting more information on Bailynn’s condition and need.

Ok folks, are you telling me that their computer, after years and years and years and years of medical procedures and doctor’s visits, doesn’t show that she has TUBEROUS SCLEROSIS!!! I call B.S. There is no way that their system didn’t already hold the information that was required for this purchase, but more information was sent.

We hear nothing…….till Tuesday. Tuesday, while already knee deep in other projects and trying to rest my back (which has been killing me since a bad lift during Thanksgiving break), Deaconess Home Health (and yes I am disclosing who did this cause the world should hear!) called to say they would be delivering Bai a hospital bed Wednesday. I look around Bai’s beautiful room. My heart is having a hard time dealing with this decisions. It is one more step to making her look like a patient and not a resident in her home, but I concede because the electric  function of raising her head is so worth it. I rip her room to pieces, with the help of Isobel. We put her bed in the attic, her beautiful white bead-board trundle bed. We scrub her baseboards and floor, since the room is so empty, and lay her mattress back on the floor for one last night of slumber before the bed arrives.

Wednesday comes and Bai’s nurse arrives, our piano teacher comes for lessons, and the call comes, the bed is on its way. I don’t know what I expected. I don’t know what I hoped for, but I will tell you, it was not this!

A super nice guy from Deaconess Home Health comes, again I will disclose who, but the guy who delivered is not at fault and honestly he has been delivering things to Bai for years. He is just a minion. A cog in the machine. He brings this “thing” into my home this ancient, brown, “thing”. He places it in my princess’s room. He sets it where her beautiful bed sat. It is at least 30 years old. It is covered in scratches. I can only think that someones cat took hold of this thing and went to town. The paint is chipping in the places. The rails look as if someone at sometime was restrained to them. It smells of mold and old, though I know they clean them. Maybe it is a hint of cigaret smoke. The metal looks like a death trap. The crank at the end to raise and lower it, can not be used by me, my ailing back cries, my heart fractures. This is awful. This is so much worse than my head had prepared for. This bed is straight out of a mental institution. This bed has lived too many lives. This bed has seen too much death, illness, and heartache. This bed does not belong in my baby’s room. This bed belongs in a dumpster, burned in honor of the life it lived, or sailed to sea. This bed has to go! Are you kidding me!?

Ok, so this is where my heart tries as it may and tries as it might to make this bed be ok….the straw?….this man tells me how happy he was to find a NEW mattress to bring! Vomit. I feel vomit! They give dying, ill, special needs people USED mattresses!!! Our health care system is so broke! My medical insurance is PAYING for THIS!!! NO! NO! NO!

I compose myself. I make slip covers. I try to hid the look of evil. I try. I try so hard. I tell myself I am being snobby. I tell myself to not be that person. I tell myself Bai needs this and then – I cry. I scream inside my head NO!! She doesn’t need “this”! Yes, she needs an electric bed, yes she needs the idea of this, but no! she doesn’t need THIS! This piece of crud doesn’t belong in a princess’s room this thing has to go. I call and try to sound as not snobby as possible. Get this.

In 13 months time, we will OWN this thing! We can’t switch, we can’t request a less chewed on, less awful one, this is the choice. Bai’s insurance will only pay to rent one, this is the rental option. After, 13 months of renting, it simply switches to owning. I pose this question? HOW MANY TIMES!? How many times has this bed been sold, used, rented, paid for in full and it lands here. This is another example of our broken system. I will not allow our insurance to pay for this thing. We have been duped. The American people are paying for garbage! Yesterday, I talk to the pediatrician’s office. I beg for them to not think me pretentious. They promise. They go to town trying to help. They hit the same wall…this is the bed. NOOOOO!!!!

I call sofa city (which I didn’t know was owned by the Baumberger’s – and they have always been great to us!). I tell the lady on the phone what has happened. I cry. I try not to. I tell her that I can’t really afford to buy this thing today. I tell her I have to have financing. I beg her to help. She tells me to come to the store. We go after Bai has a CT scan of her lungs. Robin, shows me a bed. It is electric. It is adjustable, not in height, but who cares at this point. It is the softest memory, gel foam I have been on. My favorite part! Bai’s beautiful bed, I just shoved in the attic, can go around it! She can keep her bed! I am crying as typing this – stop judging me haha! She so doesn’t deserve the thing that is in her room right now. My heart and my head know this. Robin helps us get the financing we need. Bai gets this bed Monday. Happy Christmas, sweet 16, Happy Christmas again, and possibly happy 17 haha!  I don’t care. She is a princess. I can’t let my insurance purchase what is in my home. I can’t let her be the patient, at least she doesn’t have to look like it. May this bed die after it leaves my home. May it never go see another ailing person. This is the saddest most horrible thing and it deserves to die.

So today I know we made a rash, but needed decision. Bai will have her beautiful bed back (Bob will have to make some adjustments to the bedrails, but how simple) and my heart will stop its ache over this atrocity.

Bai is the princess, let her never have to look like the patient in her own home.

For Her.
Bobbi