FIre in the Hospital

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.

Hospital Pictures

various pictures from Joshua's time in the hospital (so far)

Sunday, Jan 24th 3PM

Josh in Emergency Room

(he had swine/H1N1 flu & double pneumonia

we just didn't know it yet)

Monday, Jan 25th 12:36PM

Josh napping in his hospital bed

(he'd had 2 shots of rocephin antibiotic and a tamiflu

at this point & was waiting to have a PICC line inserted)

Monday, Jan 25th 11:25PM

Josh showing his PICC line placed in his right arm

(he couldn't eat or drink much all day

in preparation for this procedure)

Monday, Jan 25th

Josh and Mom about to go to sleep

Tuesday, Jan 26th (mom's birthday) 3:43PM
Josh started on IPV breathing treatments

Wednesday, January 27th 11:52AM
Josh injected with radioactive solution in preparation for special heat to toe CT scans to look for possible neural crest tumors - Josh was asleep when the technician came to do the injection and never even knew it had happened until I showed him the picture later

Thursday, Jan 28th 10:52AM

It was rainy outside the hospital room window

Thursday, Jan 28th 12:25PM

Josh in the CT scanner in nuclear medicine

sublevel 2 of Methodist Children's Hospital

(searching for tumors that produce hormones)

Thursday, Jan 28th, 12:26PM

Thursday, Jan 28th 12:33pm

Thursday, Jan 28th 12:34PM

Thursday, Jan 28th 12:40PM

Thursday, Jan 28th 12:49PM

Thursday, Jan 28th 4:40PM

Josh works on homework in his hospital bed

Thursday, Jan 28th 10:39PM

we hung up posters Josh's classmates

and teachers made for him - AWESOME!

Thursday, Jan 28th 10:41PM

Josh showing off a card he got from school

Thursday, Jan 28th 10:41PM

Josh really liked this card

(he liked them all but wanted me to take a picture of this one)

Thursday, Jan 28th 10:42PM

school nurse, Adriana drops by for a visit

(she delivered the cards & posters from school)

****FRIDAY, Jan 29th WAS CHAOS DAY*******

there was a fire in the bathroom a few doors down the hall from our hospital room and we got evacuated around 7AM

Josh went for an identical scan to the one a day before

about Noon (I was still in my PJs for it because my clothes were left in our room when we evacuated)

We spent the majority of the day in a room in the ER

(no private bathroom there so made it difficult for us to go when we needed to - especially for Josh on a ventilator and attached to an oxygen tank when he left his bed)

We got back to our room about 4PM

Not much else happened other than getting settled back

and resting up from the craziness

Saturday, Jan 30th 2:19PM

Steffany & Bryan brought baby Logan by the hospital so I could see him.

I told them to keep him in the truck and I'd come down (don't want to check getting him sick) This was the day we learned officially Josh had swine/H1N1 flu

Saturday, Jan 30th 5:07PM

Josh waited all day to go get this chest XRay done

the technician let me take a picture of the xray on her computer screen

(the bottoms of both lungs look white to me - which would be bad - but Dr. Morse - a lung doctor - says they look much better than his from earlier in the week. She was very happy with this xray)


Sunday, Jan 31st 11:47AM

Josh on his pacers & not the ventilator or oxygen

for the first time since we've been in the hospital

(lasted about an hour then he started getting too tired & he started de-satting again)

Sunday, Jan 31st 4:38PM

Josh eating an early dinner after getting all cleaned up

I think he's starting to feel much better

Sunday, Jan 31st 5:02PM

Josh getting another IPV breathing treatment

the machine that gives it is there just behind his head

Sunday, Jan 31st

James forwarded me this picture Steff emailed to him

this late afternoon of Logan... she thinks he looks like a "little gangsta" because of the way his clothes fit him and because he had his hands up to his face.... I say he's a little angel :)

My birthday in the hospital

Today - January 26th - is my birthday



Not the place I had hoped to spend it.....

but Josh is sick....

so we are in the hospital.







It's not fun when Josh is sick, but it did NOT ruin my birthday.

Josh gave me a card that Nurse Nancy brought up for him to work on for me. He wrote in it that he is glad we get to hang out together. It was sweet.
(I'm glad to get to spend the whole day with him, too)


Nancy and Jenny (Josh's home nurses) came to the hospital and brought us gifts and us girls went to lunch together in the hospital cafeteria while Josh ate up in his room.




This evening, my sister brought a bithday cake and dinner up to the hospital and my mom called to join in singing me "Happy Birthday" before I blew out my imaginary candles. We sliced up the cake and even shared small pieces with the hospital nurses... but sh! don't tell. :)




So, how is Josh doing?
He still has pneumonia in both lungs and is still fighting the flu (all we know is it's Influenza A).

He had a visit from his endocrinologist (Dr. Danney) early this morning who said all the tests Josh had in his office a week or so ago came back with good results. He told Josh he hoped the spot noticed on the CT scan from yesterday might only be a nodule of pneumonia (instead of a tumor). We would find out for sure after another scan scheduled for today.


Josh was very dehydrated yesterday and his urine output low but very concentrated. Overnight, he got IV fluids after getting his PICC line put in. Even though he took his DDAVP which is supposed to help him hold in his fluids, he was up in the night and again early morning peeing out LOTS (a urinal full each time). By just before 11AM, Josh had an output of like 2,000 ccs - nearly twice his input level. It was a little alarming. His nurse called Dr. Danney back for his advice/orders as I was going to lunch with our home nurses. When I got back, Josh's hospital nurse told me Dr. Danney said he wanted me (not one of the nurses) to give Josh a dose of his DDAVP (since I had the most experience giving it to him - :) ). So, I gave it to him and he it seemed to help.


Josh's lung doctor (Dr. Patel) who wanted him admitted to the hospital in the first place came in a little later in the morning. He told us a few things of interest: first, he is sending a rep from a different DME (durable medical equipment) company to see us probably later today, he wants to recommend we replace Josh's current ventilator (the LTV 950) with one called the Trilogy from Respironics.

And I asked Dr. Patel how long he thought Josh might need to stay in the hospital. He said at least until Friday - maybe longer. He also wanted to order a special breathing treatment to help break up some of the pneumonia in the base of Josh's lungs. Josh had two sessions of that treatment and wow it's different, but it seems to work really well.

Oh, and Josh started to complain that he couldn't hear out of his left ear (just as Dr. Patel was outside writing up orders) so I called the doctor back in to check it out. He took a look with a scope and said Josh's ear was infected, but the antibiotic he's on for the pnuemonia should clear it up, too.

After lunch and his dose of the DDAVP nose spray I gave him, Josh was loaded onto a wheelchair and I was asked to come help get him, along with his ventilator and an oxygen tank down to the CT scanner again for the test the hematologist ordered there - one with contrast. We had to stop once along the way and I had to suction Josh because some gunk came up and was clogging his trach. Luckily, we have his suction stuff right on his cart. Once we got there, they let me stay inside (as long as I wore a heavy apron) while they did this scan. Josh did very well. And we loaded him back up and brought him and his stuff back up to his room.


The respiratory therapist who accompanied us told me there is another patient on Josh's floor who has the vent Dr. Patel is recommending for us. She took me down to let me look in through the window at the vent (so I could see for myself how compact it was). She said it is fairly new and seems to have great features. She too thinks we will love it. So, Josh and I are anxious to hear from the new DME company rep and see when we'll have everything set up for him to get the new ventilator.


Below is a picture of the Trilogy ventilator:


Here is a link to a site with much more information on the Trilogy:

http://http//trilogy100.respironics.com/

We should find out in the next couple of days if or when we'll get this new ventilator for Josh.... and we expect to hear results about the spot found in Josh - whether its a tumor or not... and what if anything will be done about it.

I want to say a big THANK YOU to everybody who sent me a birthday greeting to my email and/or Facebook account. There are so many of you. I really appreciated seeing your greetings. It did help light up my day!


I do wish I could have gotten the chance to see, hold and spoil my brand new grandbaby on my birthday.... but I don't want to chance getting him sick. I plan to spend plenty of time after we go home hugging and kissing and loving on baby Logan.