We had a very rude awakening this morning in Joshua's hospital room.
Just about 7 AM. The fire alarm was going off in the hallway. We've been to this hospital (and others) before where the alarm goes off for a minute or two and we start to worry and some staff member comes along and says it's nothing - don't worry. If there was something to worry about, they'd come tell us.
So Josh is sleeping through it. But I begin to wonder after a few minutes and sit up in my bed to look out the window of our door into the hall. First there is nobody there at the nurse's station or in the halls. Then, people appear pushing baby cribs through the halls. A woman - I'm guessing a nurse but not ours - comes running to our room, opens the door, flips on the light and informs us "we are having a problem and need to move you."
She notices Josh's cart and asks, "is this patient on a ventilator?" "Yes," I tell her. So she turns to go get help. And I grab my robe and Joshua's slippers to get up and get Joshua's ventilator cart unhooked and put on backup battery power. I unhook his oxygen from the wall. The woman is back saying we are moving Josh in his bed. She asks if he is on oxygen. I said "yes - 2 liters" so she yells for someone to grab an oxygen tank and we get it set up on bottom of the bed.
As we are about to try and manuever the bed, ventilator cart and IV stand out the door, I notice Josh wide-eyed and pointing to his neck. I had forgotten his trach was still inflated since he'd been asleep. So I tell them hang on and I reach for the syringe I need to deflate the cuff along with some suction tubing with it. I deflate him, notice my cell phone nearby and grab it too, drop it in my robe pocket.. and we make our way for the door - barely fitting out.
There are so many wires and and tubes connected to Josh and everything is chaos in the hallway. Patients all around the floor are being evacuated. As we pushed Josh's bed and ventilator cart out in the hall, I could smell smoke - like burning electrical wires. I wasn't sure where it was coming from and my eyes were so focused on making sure Josh's wires and tubes were not being run over or stretched out too far that I didn't have time to look and see if there were flames or not. As we pushed Josh and his stuff down the hall, we got to an area where there was standing water on the floor. I was in slippers and socks and could feel the water soaking through as we walked. It made it hard to keep the slippers on, how quickly we were trying to move.
They led us to another hallway on the same floor beyond some double doors and stopped. They left Josh and me up against the wall in the hallway and we plugged his ventilator cart back in to a wall outlet. Then the folks who had been pushing Josh's bed and IV stand left to help others.
As I checked Josh's monitors and asked him if he was okay, we noticed some other kids in their beds with their parents by their sides. One had their luggage with their clothes and stuff. And I though, "man, I wish I would have grabbed our clothes and stuff, too." But all I could think of at that moment back in the room was getting Josh out safely with all his medical equipment. But I would love to have had my tennis shoes at this moment.
I grabbed my cell phone and called my husband to let him know we've been moved out of our room. At the time, I didn't know if we'd have a room or any of our stuff left since there was a fire. I only talked to him a minute or so when some other staff members came along and told us we were being moved to the E.R. So, I hung up, unplugged the ventilator cart and got it ready for another trip.
We trudged along through another hallway headed for a set of elevators. We all formed a line of beds waiting our turns on the elevators - all the while I wondered if that meant the fire was spreading. Oh, how I just wanted us out of there! Finally, it was our turn in the elevator. The bed and IV stand fit in no problem - and the ventilator cart went in - but not all the way. Oh no! There was not enough room for it. I tried everything I could think of and asked for their ideas. We were out of luck. We were not going to fit and there were lots more people waiting to get in. We were slowing down progress. So, we backed out.
They decided we needed to go to "the big elevators." They yelled out for somebody to "call security" and we'd have to go back through the hall where the fire was to get to those "big elevators." Oh no!!!! I was really worried about doing that. What if there were flames or something. But they were pushing his bed and I had no choice but to follow, pushing the ventilator cart.
As we got to the dreaded hallway, I could see what looked like a sea of bed pads - those kind they use on all hospital beds on top of the sheets. A bunch of men - staff of the hospital - but I'm not sure who they are - are all up and down the hall wipes up the river of water with all those bed pads. Some of those pads are in our way and they are pushing them aside for us. And a cart ahead is blocking our way to the big elevators, so they grab and move it, too.
I guess somebody got ahold of security and someone met us at the big elevators and open the doors - which requires a special key. As I ask how we are going to maneuver the bed, etc. into the elevator, a nurse with us says, we can go in any way we want. There is plenty of room in here. That elevator could have been used as a full operating room. It had carts of equipment lining the walls and it was HUGE. Thank God we fit on here no problem and got down quickly from there to the Emergency Room.
Down in the ER, we are being directed to one area but then told we need to back up and move to another ER room. Finally, everyone had found a place to hook up and wait. Our ER room was nice enough. Josh liked the nice TV he had there to watch. It was a fairly small room and only a couple of regular chairs to the side of the room. There was no bathroom in this room. And we later learned sharing a bathroom with that many other people was not much fun.
Our doctors finally found us down in the ER. The endocrinologist didn't have much to tell us. He kidded Josh about causing the "flood" by missing a dose of his DDAVP and wetting the bed to overflowing. He seemed to think Josh's numbers he watches were fine. Then, the pulmonologist came later and was mainly concerned with Josh still needing oxygen all the time. He mentioned he wanted us to get whatever it was causing Josh to need the oxygen behind us before we try to go home. And I knew we already needed to get through this last scan before we could go home. So, maybe tomorrow???!!!
They did bring breakfast trays around to the patients down there. And they were able to get some of the patients' medicines down to them, a little at a time.
A manager woman, I can't remember what she said her official title was, came around to officially apologize for the inconvenience. They had obviously had a little fire. She handed out a couple of meal voucher/coupons for $3.50 each - I guess so us parents might be able to get something to eat. The problem with that is I was still in my pj's and slippers, had no contacts in and my wallet with my money, etc. was still upstairs. I didn't want to go traipsing through the hospital into the cafeteria in my pajamas. It's hard to get food that is exactly $3.50 worth. I like to have a few dollars with me to pay for whatever the difference will be and I have no money on me - not even a debit card! So, I just decide I'll wait.
A few minutes later, some folks come by with a cart. The top is loaded with some familiar items - my laptop computer, camera, Josh's cell phone and IPOD, his PSP and deer playing cards, the blanket and pillow I had brought from home and a bag with some snack food in it I had saved up in the room (and a few other items). I was really glad to have them but really wished they'd also brought down my clothes and purse. They said there was a worry about our things being taken if nobody was around to watch over them, so they were allowed to tag them all and bring them down to us. I was so glad!
Later, when we were transported down to Nuclear Medicine for Joshua's last CT scan, a couple of staff members mentioned they heard the fire was started in room 371 (our room is 374) in the bathroom. The mom in there had left a curling iron plugged in and on and apparently it had fallen in a trashcan, starting the fire. One staff member said the soap dispenser on the wall in that bathroom was melted on the wall. There was quite a bit of damage in that bathroom, they said.
After we got back to the Emergency Room room with Josh, following the scan, one of the staff members said she would see if they wouldn't let me back in the room to change my clothes. Some of the other patients from our floor were already being moved back up. They wanted to wait to move us till last because of all Josh's equipment. If there was some reason they had to move again, they didn't want to have to do that with Josh.
That staff member lady even walked me up to our hallway. I got in the room and it looked fine. All our stuff that was left in the room was put into plastic bags and put into our closet. I finally found everything and got ready so I could go down and pick up food. I took it back to the ER so I could eat and watch Josh at the same time.
It was nearly 4pm before we got back in our room upstairs. And we again had to use the "big elevator" to go up. They called as we went and there were security officers lining the halls and there opening the elevator for us with their special key. I guess we turned quite a few heads rolling through the main lobby of the hospital to get to the "big elevators" but finally we got there and went up and got everything settled back in our room.
Now, to work on getting to go home. We have several issues to work through... including: getting our nursing company to come out for another visit to reinstate us (we need our nurses especially for the PICC line/IV), getting a machine to do the IPV breathing treatments they've been doing on Josh to help him get rid of the pneumonia. There are some other issues, but hopefully with our doctor's help tomorrow we can work them out.
2 comments:
PeI am very disheartened by your portrayal of this incident.
More than once you say something along the lines of "I heard someone say".
The "big" elevator you describe is one that is set up to do surgery in if need be. You should feel lucky they took you on it.
You refer to "everything in chaos" in the hallway. The staff at the hospital, like all hospitals, are trained for this. It may appear as chaos to you, but they performed as they were trained.
Are you an R.N.? Do you work in a hospital? If you do then you should be aware already that in disconnecting your sons O2 without having an e cylinder to connect him to, taking a needle and deflating his trach., you not only put him at risk, you also broke the law putting your liscence in jeopardy.
If you are not, then what on earth were you thinking?!
Are you in this for publicity, I have heard you are trying to get with the discovery channel, or are you really interested in your sons health?
The "area" you were taken to was what has been determined by the Fire Dept. to be a safe staging area, not just somewhere to be dumped as your account makes it seem.
You even complain about the free meal ticket amount and then turn right around in the same paragraph and say a few minutes later they came by with your belongings.? The hospital would not leave you hungry. They also would have given you some kind of a robe or maybe even scrubs to wear.Did you give the measly $3.50 ticket back?
My children are grown but there were a couple of times they were in an I.C.U.. The last hing on my mind at that time was not having enough money to sate my appetite.
The first responsibility of the hospital is to the patient. It may sound cold but you do come second.
I would hope that you would keep in mind the next time you are in a stressfull situation that those around you may actually be trained to handle it and not make it sound like you were a hero when you actually put someone in danger.
I take my responsibility very seriously as do all who work there so please refrain from making us sound incompitant.
Hi Anonymous,
I am sorry you are disheartened by my portrayal of the incident. Apparently you are reading into my story more than is really there. And it sounds like you are feeling very threatened or defensive for some reason. I am in no way criticizing anyone. My intention is to take my family and friends (who are my primary readers of my blog) through the events in my eyes and the fear in my heart during the events - which everyone was reacting to. I DO realize the staff goes through many, many drills - but drills are still not the real deal. I actually do praise the staff in how well and quickly they acted (if you go back and re-read). I absolutely expect the hospital to take care of the patient first. And No, I am not an RN. I am a mother who has extensive experience taking care of my son and his medical equipment. I knew EXACTLY what I was doing and my son was my soul focus. He ALWAYS comes first for me. I put together his ventilator cart MYSELF. It has his pulsox, end tidal CO2 monitor, extra batteries, suction materials and much more right on it. And our home oxygen canister was in the room when I disconnected him from his O2 on the wall. The RTs here even call me an RT because of my practical experience and praise me for keeping my son well enough not to be hospitalized in the last 4 years.
I did NOT expect the hospital to do anything for me. I was very thankful and felt extremely honored to receive anything. I just felt a little at a loss for how I'd use them in my pajamas. I didn't expect them to solve that for me. I would have not eaten or drank anything for days if it meant I was helping my son. I'm always someone who tries to help others above myself. If you knew me at all you would definitely know that.
All that said, I do thank you for dropping by and reading my blog. Please read more than just this one story. Perhaps you will learn something about a very rare disorder.
Oh, and no. I am not trying to get publicity for myself or to get with the Discovery Channel. That is silly. They did an hour long documentary on the disorder my son has featuring myself, my family and some of the doctors who first treated my son. You can find that documentary at the bottom of the page, if you are interested.
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