The saga of the bed

Posted by Karen - March 23rd, 2019

I have an entertaining story to tell, one that will make you want to rip out your hair at the roots.

Back in March of 2018, I blogged about our difficulties with my daughter Miranda’s bed ( http://www.friendswithfop.com/2018/03/to-sleep-perchance-to-dream/     ). In short, Miranda was a few months past a life-changing flare-up of her fibrodysplasia ossificans progressiva, and her bed just wasn’t cutting it any more. In 2017, Miranda’s left leg had flared for the better part of a year, leaving my then-12 year old daughter with a fused left hip, knee, and ankle, and it was extremely difficult for her to get in and out of, and get comfortable on, her existing bed. It was clear that she needed a new one.

With partial funding provided by the Province of British Columbia, we were able to secure a fabulous new bed for Miranda. This bed, which we received in June and which I will refer to as an “X brand” bed, was fully adjustable, and it was great. The head and feet ends could both go up and down, and you could tilt the bed any which way desired. It was such a breakthrough for our family – Miranda (and her dad and I) could actually get a full-night’s sleep without her waking 4 to 5 times a night and needing help to  to re-adjust herself or the various pillows propping her up. The bed had a cordless remote control, such that Miranda could hold it in her hand all night and adjust the bed on an as-needed basis.

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Miranda and her kitty Pepper, in the lap of luxury

Everything was great for about 6 months… And then we had a serious problem. One night, Miranda called for her dad and me in the middle of the night. We stumbled out of bed and came into her room, and found Miranda with the bed locked in mid-transition from one position to another. She said that all of a sudden, when she would press any button on the remote control, the bed would instantly let out a high-pitched beep and would not move. Everything had been working just fine, and then all of a sudden it wasn’t. We quickly verified that she was completely correct. NOTHING was getting that bed moving, not unplugging and replugging the power supply, not anything. The bed had itself developed an advance case of FOP (lol). We hunted around for the instruction sheet for the remote control, but it was no help – all it explained was how to set the clock (presumably the rest of the buttons were self-explanatory). Miranda ended up having to sleep the rest of that night in a very awkward position.

The next day I called the store which had sold us the bed and described the problem. Our store sales contact was quite concerned but had no theories, and said she would send someone out to look at the bed. The technician arrived a couple of days later, and he again verified that the bed was not moving and was just beeping whenever the remote was pressed. In fact, we told him that we had had to remove the battery from the remote, because even in the absence of the buttons being pressed, it was causing the bed to let out a beep about once every half hour. Anyway, the technician had no immediate solutions – he said he would need to remove the bed control box (the thing under the bed which receives signals from the remote control) and have it replaced, but in the mean time, he could temporarily replace the control box with an extra one they had at their office. He unplugged all the various plugs from our control box, removed it, and plugged in the substitute, which worked just as well as the first one originally had except it was a tiny bit slower (which was no biggie for us). He told us also that his office had been trying for the past couple of days to contact Company X, which had produced the bed, but without success – X just wasn’t responding to them.

I actually had an idea about what had happened… Given that the bed had been working just fine and then suddenly stalled, and given that Miranda had been holding the remote control at the time in a half-awake state, I theorized to our sales contact that Miranda had accidentally pressed a couple or a few buttons at the same time and somehow “jammed” the control box. The sales person was skeptical though, and said she didn’t think that should happen. Anyway, it came to pass that the control box from Miranda’s bed was sent back to Company X and a new one was procured, as the bed was still under warranty. About a month later, in December, the new control box arrived and the technician swapped out the temporary one for the new one, again having to unplug and replug a whole bunch of different cords.

All was well. Everything was great… for two more months. In February of 2019, it happened AGAIN!! Just like last time, the bed froze in the middle of the night. No no no no no no no no. Just, no! It was even doing that same beeping every half hour until we removed the battery from the remote control… We just could NOT believe it. There we were, back at square one. Feeling extremely frustrated, I again contacted our sales person, and she again sent the technician out. I again argued my theory about jamming the signal, which looked increasingly likely given that this had happened now a second time. However, she told me also that the previous time, she finally had actually reached Company X and presented my theory, but they had denied that that could happen (frankly I was starting to question if they knew what they were talking about, because my idea seemed pretty likely, but whatever). Anyway, on this occasion, the technician tried to swap the control box for their temporary store one, but couldn’t get it working, and he eventually ascertained that 1 of the 6 or so plug jacks in the bed wasn’t conducting any signals. He told me that the whole bed would have to be returned to Company X and switched with a new bed, because it was difficult or impossible to swap out a faulty plug jack. A day later, a couple of technicians appeared and took apart the bed and removed it, and also replaced it was a temporary substitute bed. Our sales contact simply declared that the specific bed we had must just generally be “a lemon”. I guess Company X agreed, because it turned out they didn’t argue about sending a new bed.

The substitute bed (produced by a different company) proved to be adequate, but no-where near as good as the original one had been (when working). It could do the basics, but not be adjusted into as many positions and is bulkier and feels overall less well-designed. We were able to make it work, but have to prop Miranda with extra pillows to compensate for the limited adjustability.

Now here’s where the story gets good… A few days ago I was searching through a bunch of documents to try and find something. In so doing, I stumbled across a detailed set of directions for the cordless remote control for the bed by Company X. Intrigued, and not having recalled seeing this before, I read through it. I found no relevant answers until the very end. The last comment was along the lines of, “NOTE – if you hold down the ‘save’ button for 5 seconds, you will engage the parental control figure and a beep will sound. The bed will not respond to any commands until you release the parental control by again pressing the ‘save’ button for 5 seconds, at which time another beep will sound and the bed will resume operations.”

Oh. My. Freaking. GOD. I am now 99% certain that Miranda had, on both occasions, accidentally engaged the parental control feature in her half-awake, groggy state while pressing buttons on the remote control. I think also that the control box beeping every half hour (again, both times) until we removed the battery from the remote control is most likely a feature designed to remind the user that the bed is in parental control mode. And what of the failed signal jack on the bottom of the bed from the second incident? Given that it had not been an issue when the control box was swapped out for the temporary one the first time around, and given that the various cords had had to be plugged, unplugged and replugged multiple times between initial set-up and the two failures, my guess is that coincidental damage to one of the jacks occurred as a result of all that activity. All the evidence fits this scenario perfectly.

Talks about incredibly, unbelievably frustrating. And why, I ask you, did Company X not consider the parental control theory? I forgive the store technicians and our sales contact – they’re not experts in that type of bed and remote control – but Company X should have bloody well thought of that explanation. Unreal. Assuming the parental control theory is correct, and I truly believe it is, it turns out I was very, very close with my supposition that Miranda had somehow jammed the bed herself (remember, Company X dismissed this idea).

In any event – we currently await the arrival of the brand new bed. At least we will know what to do if we have a third such incident.

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