My Birthday, Pseudomonas & Growth Hormone Issues and Oh, Snow in San Antonio!

Wednesday, JAN 26th

It's my birthday, but I was so busy, I almost didn't notice... I worked all day, went to school that evening

My husband, James, brought me flowers and a card for my birthday



and I received a few other gifts from friends, family and co-workers




we celebrated a day early Tuesday, JAN 25th
at The Melting Pot for some yummy chocolate fondue!!!!


check out that flame (this is the Flaming Turtle)

I highly recommend the Flaming Turtle!!!!
make sure you try it with the rice krispy treats! YUMMY!


the birthday girl, ME!


my son, Josh


my sister, Amanda


Josh's nurse, Nancy


Thursday, JAN 27th

Josh was coughing up yucky, chunky, dark secretions from his trach... his nose was a constant runny thing... a little worried, but sent him to school


then his temperature starting rising...

his school nurse called me to pick him up...
and I made him an appointment within the hour to see a doctor with his pediatrician's group



strep - negative
flu - negative
sputum culture - results in a few days

in the meantime, another oral antibiotic just in case



that evening, we celebrated my birthday week a bit more with a Strawberry Banana Split cake made by my sister




Friday, JAN 28th

kept Josh home from school after he had a really rough night, had to be suctioned several times

his temp went up even more - too 100.5 (his base temp is often 96-97)

secretions still increased and yucky, but getting a little better



needed a little oxygen to help keep his O2 sats up overnight, but otherwise ok



OH... Josh ran out of growth hormones tonight!
there was some issue with our new insurance trying to get them approved....
waiting for the specialty pharmacy that handles growth hormones to get the official denial from our insurance company and then to send that to Texas Medicaid to see if they will approve paying the entire cost so Josh can get his shipment that should have been here days ago. :(

MONDAY, JAN 31st

Josh seemed well enough to return to school

heard the doctor called with sputum culture results as I was headed to my evening class... left message for me to call the next day

TUESDAY, FEB 1st

Doctor says Josh the culture from his trach grew Pseudomona...
that can be bad... probably turned his secretions dark and stinky....
if current antibiotic does not seem to completely clear him up, he may need to be admitted to
hospital to get IV antibiotics!!! NOT good news

Here is some info I found on pseudomonas:



''Pseudomona'' literally means 'false unit', from the Greek pseudo ('false') and mona ('a single unit').

They are gram-negative, rod-shaped bacteria. They love water, soil and plants. They often cause a fluorescent, yellow-green, stinky secretion. They are also commonly the cause of urinary tract infections. Being Gram-negative bacteria, most Pseudomonas are resistant to penicillin and similar antibiotics, but a number are sensitive to antibiotics such as tobramycin, gentamycin and ciprofloxacin.

You can learn much more about this yucky bug here: http://emedicine.medscape.com/article/226748-overview


meanwhile, the weather turned COLD this afternoon.... expected to just get worse over the next few days... Yay!

Monday, I wore a sleeveless blouse and flip flops to school.
Now we are pulling out our big coats and gloves ....
I hope this doesn't cause Josh any more health troubles

WEDNESDAY, FEB 5th

It's 20 degrees out with wind chill of 4!! Snow in the forecast!! but so far it's been dry and windy

And Josh seems to be doing a little better every day... crossing our fingers he'll stay out of the hospital!

unfortunately no progress reported on the growth hormones, though :(


I had my first test in my Anatomy and Physiology II class tonight.
The subject was the heart and blood.







Found out later I made a 97% on the Lecture portion and a 98% on the Lab.
YAY... it was worth getting out in the frigid temps to go take these tests!

FRIDAY, FEB 4th

Snow Day!!!!! Late last night, the city of San Antonio closed all its highways because of ice. Then, while we were all sleeping, it started to snow.

We got a call with a recorded message at 5AM from Josh's school district saying all classes were canceled. That also meant my work was closed. So, we got to sleep in.

When we finally got up... this is what we saw out front:



It wasn't alot of snow, but any on the ground in San Antonio is amazing!

Josh had to go see this "amazing" occurrence for himself.






Below is a news report with an aerial view of the snow and closed highways in San Antonio:



The snow was all melted off by the afternoon, which was good so people could get out and about again!

Oh, still no word on when Josh will be getting more growth hormone. I worry what that will mean for him. It has been more than a week off the hormone that he has been getting injections for for the last 4 years.

But, Josh seems to have kicked to pseudomona... his temp is back down to normal... his secretions are nice and clear and a little less in the amount, too. And today's temp outside is going back up to the 60's. So, hopefully nothing will creep back in now.

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!!!

Ventilator Cart, ROHHAD on Mystery Diagnosis & Collecting Spit

New Ventilator Cart

It's been kind of a trusted friend, Josh's ventilator cart. We've been using a cart to haul around Josh's ventilator and medical supplies for some time. Below is a picture from 2009 of Josh at the doctor's office with his ventilator cart.

Back then, Josh had to be connected to his ventilator all the time. He originally had a bigger ventilator, the LTV 950, a bigger suction machine/bag, and we had to charge his external lithium batteries for his ventilator on a separate charger.

Josh has since upgraded to a more compact and lighter ventilator - the Trilogy 100. He recently got a new, smaller suction machine/bag. And his new ventilator has built in external batteries that charge while they are hooked up to the ventilator - so no need for the extra charger. We've been happy about having lighter and smaller components on the cart - but the cart has taken quite a beating over the years.

Here is a fairly recent picture of how his ventilator cart looked with the new Trilogy vent:



Well, yesterday, as the ventilator cart was being loaded onto the school bus on the wheelchair lift, the cart toppled over. A side rail broke, crippling the cart. Those particular type carts are no longer available at the Container Store where I got the last one. So, we had to say goodbye to our old friend, and I had to scramble to find a replacement of some kind last night, so Josh could go to school with all his gear today.

I found another type of shopping cart at Target - but it did not appear too sturdy. I bought it anyway and brought it home. Here is a picture of it:


But I also remembered my daughter had a baby stroller that had a base and infant car seat that separated - and she was no longer using it. I thought I remembered it seemed like it might make a nice base for a ventilator cart. She thought it might topple over too easily, but I asked her if I could try it out anyway, just in case. And she agreed. So, I brought both home last night and stayed up WAY too late working on putting a new cart together.


I ended up using the baby stroller base and added some wire baskets I'd put on the last cart. And this one seems to work out great (so far). We still need to add straps to the sides and make sure they are adjusted to fit the lift arm in our van. And we have to turn it backwards to get it in the van where the old cart went, because this handle area is longer than the old cart's. But at least it works and is plenty sturdy. And I think we've got the weight distributed nicely so it won't topple over.

Plus, this ventilator cart, has two cup holders and a small compartment for small articles near the handle and nice breaks on the back wheels. It also rides smoother than the last cart. So, the nurses and I are pretty pleased with the end result. I think Josh will like it too, although one nurse kidded with him that she was going to bring a baby doll to ride around in this cart since it was a baby stroller to begin with. He just laughed at that comment.



Josh spent much of the month of December into the first week of January fighting off some kind of sinus infection. He went through two different kinds of antibiotics. We are still not certain it is completely gone, but at least for now his temperatures have been nice and low and the secretions have not been terrible colors. He did require oxygen along with his ventilator for several hours last night - so not sure what that was about. Health-wise, we just take it all day by day and pray for the best.

MYSTERY DIAGNOSIS





Meanwhile, one of our internet friends who is also diagnosed with ROHHAD, Haven Fowler, made her premier on Mystery Diagnosis last night! Here is a link to a video about her episode: http://www.oprah.com/own-mystery-diagnosis/Mystery-Diagnosis-Trapped-Inside-Their-Bodies-trailer

Congratulations Haven (and to your mom & dad) on a great episode! You looked marvelous! And we hope it will inspire more doctors to learn about ROHHAD. We sure hope there are answers out there for this disorder soon.

GENETIC TESTING

Speaking of helping teach doctors more about the disorder.... we are participating in a genetic study into ROHHAD. We signed off all the papers with The Manton Center for Orphan Disease Research at Children's Hospital Boston.



They sent us saliva collection kits, so they could get our DNA. We spit in the cups and FedEx'ed everything back to them yesterday afternoon.



We hear there are 12 families signed up to participate so far. We sure hope this brings some good information to the doctors there. Maybe one day doctors will know what causes ROHHAD and how to cure it!