I decided to start with a recent picture of myself so you could see who it is writing to you. I recently decided to cut some of the length off my hair. I like it better this way. What do you think?
The last time I wrote, it was mostly about our change in health insurance that led to my 14 year old son, Josh being off his growth hormones for nearly a month. During that time, his heart rate dipped so low we were afraid it would stop and we couldn't start it back again. We were so worried, we went to the emergency room once and then to see his heart specialist.
Below is a picture of Josh at the E.R. having an EKG done.
And below is a picture of Josh having an echo of his heart done by the specialist when we went to her office.
The cardiologist, Dr. Hospers, nearly sent us to another doctor to have a heart pacemaker implanted. But Josh started his growth hormones back up just in time that she decided he wouldn't likely need a heart pacemaker - just to keep taking those growth hormones.
But just as we mostly put that worry behind us, a new trouble arose.
One of Josh's nurses, while he was sleeping, picked up a tube from his CO2 monitor down to his trach. She wanted to check an error reading on the monitor. She did not notice that tube was wrapped around another, the air hose tube (circuit) that runs from his ventilator to his trach tube in his neck. And inside that tube was a build up of water from his heated humidifier. The lifting caused the water to pour from the tubing into his windpipe (trachea) headed for his lungs. He coughed some out and the nurse quickly suctioned as much as she could from his trach tube. But it looks like enough got in there that some stuff from the sitting humidifier water started to grow inside of him.
Below is a picture of Josh sleeping all hooked up to his ventilator (notice the tubes):
Well, it was either from that or from moisture that built up and allowed mold to grow inside the tubing of his breathing treatment machine (the IPV). That tubing had not been taken apart and dried out properly a few days while Josh's main nurse was away on vacation. When she returned, she noticed the mold inside the tubing and filter - but only after Josh was already taking the breathing treatment. As soon as she saw it, she stopped the treatment and told me what she had found. We had to get all new tubing for that machine and in the meantime give Josh regular nebulizer treatments instead of IPV. (IPV actually sends blasts of air down into the lungs along with medication and saline.)
Below is a video from a little while back showing Josh taking an IPV treatment.
Both those incidents happened shortly after we had decided to change nursing companies. We have high hopes that this new nursing company will send us more nurses to train so we have backups and a better supply of quality nurses to choose from. They have taken the first nurse mentioned above off our case and we have another coming to train and start working next week. They are also working to get Josh the guy nurse he wants. And they've hired Josh's school nurse to also be one of his home nurses. She is even able to bring him home from school!
So, Josh had a sputum culture taken (that is a sampling of the crud he coughs up through his trach tube - mucus - and it is taken to a lab and allowed to grow whatever is in there for a few days) March 30th. When we went to see his lung doctor on April 5th, we got the results back.
Below is a picture of Josh at that appointment, doing a pulmonary function test.
We were afraid he had mold growing in his trach and maybe even in his lungs. But the doctor said no, he had a type of bacteria growing - heavily - according to the test. That bacterium is called Stenotrophomonas Maltophilia. I had never heard of it. My nurses say they had never heard of it either. So, I looked it up.
|Stenotrophomonas maltophilia |
Palleroni & Bradbury 1993
Pseudomonas maltophilia (ex Hugh and Ryschenkow 1961) Hugh 1981
Stenotrophomonas maltophilia is an aerobic, nonfermentative, Gram-negative bacterium. It is an uncommon bacterium and human infection is difficult to treat. Initially classified as Pseudomonas maltophilia, S. maltophilia was also grouped in the genus Xanthomonas before eventually becoming the type species of the genus Stenotrophomonas in 1993.
S. maltophilia are slightly smaller (0.7–1.8 × 0.4–0.7 micrometers) than other members of the genus. They are motile due to polar flagella and grow well on MacConkey agar producing pigmented colonies. S. maltophilia are catalase-positive, oxidase-negative (which distinguishes them from most other members of the genus) and have a positive reaction for extracellular DNase.
S. maltophilia is ubiquitous in aqueous environments, soil and plants, including water, urine, or respiratory secretions; it has also been used in biotechnology applications. In immunocompromised patients, S. maltophilia can lead to nosocomial infections.
In Josh, it has caused him to cough up and his nose to run a yellowish - greenish mucus, very thick at times (especially from the trach) but pretty thin at times from his nose. At the doctor's office, Josh went through an entire box of kleenex!
The doctor prescribed Bactrim. Josh is to take one pill every 12 hours for 14 days. We had hoped Josh would be well enough to return to school after taking three of the pills. I tried sending him to school, but he was sent home running a fever. Then, he required oxygen the entire next night, so I kept him home again. It was a good thing I did, because his temperature was back up again that day. We will try school again in the morning (Friday, April 8th).
Meanwhile, I am still going to school Monday and Wednesday evenings taking Anatomy and Physiology II and taking an internet English course. I also still work at the daycare and do everything at home to keep the place operating. And I turned in my application packet to get into the respiratory program next fall.
We had a visit from my parents. My dad had an eye surgery in Austin and stayed here with us a week afterwards. He was worried something went wrong because he could see much better out of his one ok eye for a day, then it was like a curtain was pulled. He went back to the eye dr and they said it was ok. It just had blood floating around in there that would take some time to be reabsorbed. While they were here, we took my folks fishing and my husband, James fried us up some of the catfish we caught.
Below is a video and some pictures from our fishing trip.
Lots more has happened in the family - especially in the extended family back in Odessa. There was a death in the family that had James, Steff and her hubby and son making a trip back there for a few days. Josh and I were not feeling well, so we stayed home. After my parents have been back home a few weeks, my dad is happy to report he is seeing much better again.
My 14 month-old grandson, Logan is growing and doing more and more all the time. I kept him last weekend and he was walking - nearly running all over the place. In fact, he went all the way up the stairs by himself (well, I was right behind him to make sure he didn't come tumbling down). He sure is a cutie pie!
Check out this video. Josh is blowing bubbles at Logan in our kitchen. Logan just loves it!