Pulmonary Clinic Day report

Today was another scheduled doctor's visit - at the Pulmonary Specialty Clinic.



Our appointment time was 9am, so I turned on my alarm for our normal wake up time for school. But I had forgotten my husband had turned off the electricity to our room to put in a new light switch the other day. That meant the alarm clock thought the alarm should be set for 12:00 not 6am.



Luckily, my sister called and woke me to tell me something she heard on the radio on her way to work - but it was long past the time I was planning to get up. It was already almost 7:40AM. I had hoped to be ready to leave by 8AM. We skipped Josh's morning breathing treatment, grabbed a bite to eat on the way and the nurse helped us get everything loaded. We left out a few minutes later than I'd hoped.

Luckily, traffic wasn't too bad and we arrived at the clinic right on time - actually about 8:50AM.


At the weigh in...



Josh is now 212 pounds (which is not really more than at his last doctor's visit in December)... and his height came in at about 5 foot 5 and a half inches (which is about a half inch more than the last check). That means his weight has held steady even though he is still growing taller at a good rate. That is good news!

There was a bit of concern when they took his blood pressure the first time. But when he sat down and relaxed a couple of minutes and they took it a second time, it was nice and low. So, that was good.



The dietician came in next....

she said we seem to be doing a good job... but she gave us some papers to study about helping make good food choices and tips on helping you eat more small, low cal meals throughout the day, and make sure you understand labels on your food. We already knew about that. They officially put Josh on a 2,000 calorie a day diet - which is about where he is now, I think. And we talked about what a good sodium level in our food should be for a day. She said 2,000 mg. I think we are probably under that most days.

The respiratory therapist was next... to do PFTs (pulmonary function tests)... Josh did very well on them... see pics/videos below:












A new case manager is on duty for us now.... Irene... she will follow up with our DME (durable medical equipment) company about getting extra sterile q-tips and 2x2 guaze to help with extra trach care sessions to help prevent the spread of any MRSA that is currently colonized in Josh's trach area.



Then, after we had been at the office for over 2 hours, we finally saw the pulmonologist (lung doctor) Dr. Kelly Smith.



We went over all the pertinent stuff that had happened with Josh since the last time we'd seen him: hospitalized after Thanksgiving following stomach bug for dehydration, suspected sinus type infection and two different antibiotics (augmentin for 10 days then Bactrim DS for ten days)... mentioned that sputum culture had grown MRSA (nasty infection) at that time. Sputum is no long ugly, discolored, but nurse reports it still has fowl odor. So, Dr. Smith orders another sputum culture today to make sure it's not "taking over the neighborhood" as he explains it. We should get results back on that in a couple of days.

We brought in Josh's memory card from his bedside ventilator, so we gave that to them to download (in case it has info that could be pertinent).



Then, it was signing paperwork, getting our copies..... (see Josh's current doctor orders below)....








Then we loaded back into the van and headed for home.

We got home around 1pm, and finally got eat some lunch!!

Now, I've faxed off the paperwork to Medicaid Transportation, proving we did indeed go see that doctor that is 19 miles from our home.

PRESCRIPTION PROBLEMS

And we've been having issues with Josh's prescriptions. Medicaid is supposed to be paying the co-pays on them. But since we started a new primary insurance this year, they are experiencing a glitch in their system, wanting the pharmacy to first bill our old insurance company before they will pay. I've tried calling Medicaid, and the other number they gave me to report the change in our primary insurance. I ended up having to leave a voice message. When they returned my call, they said because I was not the policy holder or pharmacy, they could not take any information from me! James is the policy holder and has to sleep until the time this place closes because he works nights! So, I called the pharmacy back and told them the whole story. They will try again to get it all worked out. I hope they do it soon, so we can pick up the three prescriptions that are sitting there waiting on us right now.

Next, Josh and I have to take back the cart I bought from Target, that I am not using for his ventilator and medical supplies (since I was able to use the baby stroller base).

Then, it will be time to get coffee up to James and start getting dinner ready. And I need to start work on my first internet class for English, and work on applying for more scholarships.


Tomorrow, it's back to work, come home to meet with our home respiratory therapist who will be stopping by to go over the ventilator with our newly hired MALE nurse for Josh. Then, I will have to fix and eat dinner quickly and head off for the first night of Anatomy & Physiology II classes this semester.

PHEW!!!! That is alot to do in the next 24 hours or so!!! I'd better get to it!!!

Morgan's Wonderland Grand Opening

We are fortunate enough to live very near an awesome first-of-its-kind theme park for children of all ages with special needs.

Saturday, April 10th marked the park's grand opening ceremony.


We were there to experience it and get our first look at the park.



Check out this 2 part special report about Morgan's Wonderland by a local news station, KSAT 12




About ten thousand other folks were there for the grand opening along with us.

Some of those who participated in the opening ceremonies were Actress and wife of Spurs Basketball player Tony Parker - Eva Longoria-Parker, and former Spurs Basketball great David Robinson.

The park opened its gates to all us visitors at 6pm.
Before that, we lined up in front of the main visitor's center.



Some Star Wars Characters were there, too.

Darth Vadar even posed with Josh for this picture:

One of the first things we checked out in the park was a off-road adventure ride.

Here was Josh waiting in line to get on the ride (see the jeep cars behind him. They are loading a guest who is in a wheelchair into that one).

Josh insisted he wanted to be in the driver's seat.

And still, we all rode with him :)

we made it to the finish line :)

Josh tested out the remote control pirate ships

and the water canons

and before we headed out,

we played in the water works area

the lines were very long (with all those people there) to ride the train or check out some of the other great features. So, we are planning to sign up for a return visit, when the park will be a little less crowded.

The great thing is, it does not cost anything for Josh to go to the park (because he has special needs) and it should only cost those of us accompanying him $5 each.

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 :)