Friday, January 29, 2010
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.
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 12:34PM
Thursday, Jan 28th 12:40PM
****FRIDAY, Jan 29th WAS CHAOS DAY*******
We got back to our room about 4PM
Sunday, Jan 31st 11:47AM
Tuesday, January 26, 2010
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:
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.
Sunday, January 24, 2010
Josh had a really scary night last night (well it was scary for me). We were without a nurse at home and Josh had been de-satting (his oxygen saturation levels were low).
I had him on extra oxygen and even raised his pressure control on his ventilator (to push the air in a little harder) but he was still not getting enough oxygen and his carbon dioxide levels were too high (he wasn't breathing out enough of the bad air).
He had lots of secretions (gunk in his nose and throat, coming up through his trach). It was mostly all yellow - which is usually a sign of infection.
And his temperature was nearly 101. Tylenol and ibuprofin were not bringing his fever down either.
I got him as stable as I could and we slept on the living room couches so I could be beside him all night. We were up at least every 4 hours, suctioning and medicating.
I called his lung doctor's office just before noon and the on call doctor told me to take Josh to the E.R.
I figured they would want to admit him once we got there, so I started to pack stuff and throw clothes in the washer (so my hubby could put them in the dryer and have clean clothes for work). I was also waiting for my sister to bring me some lunch (Josh wouldn't eat). I got all Josh's meds together and when I went to get an oxygen canister to take, we had trouble with the piece that goes on to regulate how much oxygen comes out. It was missing an O ring and would not work. It took a while of trying to look for the O ring, trying to rig one and then finally realizing we had another whole controller new in a box. Once we found it, and got it on, it was nearly 1PM!
Loaded in the van, my sister came with me to help with Josh and his stuff. We were making good time most of the way across San Antonio. But then we hit terrible traffic. So, a trip that should have taken no more than 35-40 minutes took more like an hour. We made it to the hospital just before 2PM.
The good news is, they got us in right away to a triage room.
They did some blood work, swabbed for strep and flu tests and did a chest xray.
The first results were from the chest xray. The doctor said Josh had density in the bottom of both lungs. They didn't know what it was from, but wanted to see it better, so they ordered a CT scan.
After wheeling through the hospital to radiology for the scan and back, it wasn't too long until results were back on it and from the swabs. Josh has pneumonia with some collapse and he tested positive for the flu! He had the flu shot this year, but not the H1N1 shot - not yet (we were waiting for him to get over this cold or respiratory infection - he had already had a course of antibiotics he started 2 weeks ago and had tested negative for flu then).
The nurses could not get an IV going in him, so they were giving him medications by pill and shots (Tamiflu by pill and a 2 big shots of antibiotics - one in each cheek). We are told he will have a pic line placed in the morning and he will receive further medications through it.
Yes, he is being admitted to the hospital. But it is now coming up on 10PM and we are still in the triage room of the ER, waiting on a room upstairs.
Josh is sleeping, though right now. And he has eaten a little and drank alot of gatoraid and some water.
His oxygen saturation levels are still lower than they should be and his ETCO2 levels are too high. Hopefully tomorrow they'll be much better after a night of rest and the antibiotics and Tamiflu have a chance to work.
Please pray for Josh and for me. This is going to be a trying week. Oh, by the way, Tuesday is my birthday - and I'll be spending it in the hospital with Josh.
I'll end this with a happy note, though. Josh's sister, Steffany gave birth to her baby boy Friday night (01-22-10). He was 8 pounds 14 ounces and 19 inches long. He is a beautiful baby boy.
Tonight, both of my children are hospitalized - in two different hospitals - one down the road from the other. Steffany and the baby will likely get to go home tomorrow. Josh, though, will probably be in for several more days (even though I don't tell him that).
Saturday, January 23, 2010
Steffany was in labor since about 6pm Thursday the 21st. She and Bryan stayed the night with his father and step-mother, who took them to 2 hospitals over night, just to be sent back home. Steffany was only dilated to 1 cm and the doctors did not feel she was ready to be admitted to the hospital yet.
January 22, 2010
Steffany's step-mother-in-law, Stacy phoned me around 7:30am to give me an update: Steff still having contractions and had not slept at all overnight. I got ready and went to be with them.
Steffany's contractions were about every 4 minutes until around 11am, when she also became nauseous and vomited. I only mention this because it was a signal to call the doctor. He gave us permission then to return her to the hospital.
Bryan rode with his dad and I rode with Stacy and Steffany. We arrived at St. Luke Baptist Hospital around Noon. Steffany was taken into Triage and we all had to wait outside for her.
By 1PM, we were with Steffany in Triage and she was given IV medications, which finally allowed her to sleep.
About 45 minutes to an hour later, Steffany was moved to the Labor and Delivery Room (#11) where she would continue having contractions all afternoon. Luckily, she was pretty heavily medicated at this point.
There in the Labor and Delivery Room, several of us waited with her:
Bryan, his mother Brenda, his grandmother Katherine, his step-mother, Stacy, friend Alisha and me.
Bryan was very good with Steff during her labor, almost constantly there holding her hand and being supportive.
Around 4:20pm, Steffany's water broke (this happened while Bryan was in the room alone with Steffany so he told us all about it when we got back in the room). Her IV meds wore off soon afterwards. She was in ALOT of pain now!
By 5pm, Steffany had an epidural and slept some more.
After a nap, she was finally awake and talking to us around 6pm.
Dad James, brother Josh and his nurse Nancy arrived around 6pm, too.
Steffany was still only dilated to about 5 cm. They said it would be a while, so we went to go eat in the Hospital Cafeteria.
Just as we were discussing plans to go get my phone charger and pick up my van from Tom & Stacy's house, the doctor came in and said Steffany needed a C Section. She had been running a low grade fever all day and the baby's heart rate was getting a little lower than they'd like. Also, Steffany was still not progressing (not further dilating). They were worried about infection, etc. So since she would go into surgery in the next few minutes, we decided we weren't going anywhere!
We took a few pics before they wheeled Steffany out of the room for surgery.
Bryan went in with Steffany during the C section.
The rest of us waited in her labor and delivery room.
About an hour later, they finally wheeled Steffany and baby Logan back into the room. But, they quickly kicked us out so they could get Steff hooked back up to everything in her room. Here are some pictures Bryan took in the surgery room and shared with us on his laptop computer when we were finally allowed to come back in and officially meet Logan:
Logan Wyatt Boyd was born at 8:24PM. He officially weighed 8 pounds 14 ounces and was 19 inches long.
We were only allowed in 2 at a time, and we pretty much all got pictures with Logan, but not all with the same camera and we haven't had a chance to get all the pictures swapped. These are just a few of the ones I got with my camera:
Tom with his new grandson
Stacy with her new grandson (she had stayed up all night with Steffany then all day with us, too)
My sister, Amanda is Logan's Great-Aunt :)
Josh's nurse, Nancy was ear-to-ear smiles to get her turn to see the little bundle of joy, too!
Just before we left so the new family could get some sleep, I took these pictures of Steffany holding Logan. She was about to learn to breast feed him for the very first time.
January 23, 2010
Almost a whole day after Logan was born, James and I were finally able to get back over to the hospital to check in on him and his parents. Josh was not doing too well with his oxygen and CO2 and I was afraid to try and take him anywhere. He was just needing oxygen too badly. Luckily, Nurse Nancy came to the rescue and agreed to sit with him for a while so we could go visit and have dinner. Below are some pictures we took from the visit:
I got to change Logan's diaper (even though he really didn't need it). It gave me a chance to get a real look at him without him being all bundled up.