The last few days have been filled with trying to get my medications squared away. First, I had been presscribed Prevacid solutabs to prevent any reflux. Grandma Glenda gave me my first dose and it clogged my g tube requiring a g tube change. After doing some research on the tracheostomy website, Mommy thought she had some tips to get it to work. So the next night she gave me my Prevacid and everything was fine. So the following night when she gave it to me she wasn't prepared to clog my g tube again - that's right 2 g tube changes in three days. Mommy then got on the phone to try to get Prevacid in a compound form that would not clog my tube. When she went to pick it up, though, the pharmacy let her know that they had wanted to wait to fill it until talking to me first since it would be $65 a month for the compound vs. $0 for the solutabs. So back on the phone she went to talk about other options and settled on Zantac in a syrup form. It is probably not as effective but since I don't have much in the way of symptoms of reflux it is probably going to be just fine.
As Mommy was in the midst of figuring out the reflux meds she got a call from my pulmonologist that the secretions that the sent for testing came back and I am growing two types of bacteria - serratia marcescens and streptococcus pneumococcal. That will require two types of antibiotics. The first is azithromycin which is five days through the g tube, no big deal. But the second antibiotic was gentamicin and apparently there is a shortage. When Mommy went to pick it up from Rite Aid they told her they only had a five day supply of the 10 day supply that was ordered and it was on back order until mid-September. Mommy called the doctor and had him check with the pharmacy at Primary Children's and they told him it was back ordered until November! Since it is never a good idea to only give part of a dose of antiobiotics the doctor changed the prescription to tobramycin or "tobi". There is a version of tobi made for inhaling through a nebulizer but apparently it is like $5000 and most insurance companies only cover for cystic fibrosis patients. There is another version of tobi that is meant to be injectable but many doctors also have kids inhale through a nebulizer. So when Mommy went to pick up the injectable kind and asked the pharmacists some questions about nebuilizing it he took a minute to catch on.
Since I got on my ashthma meds through an inhaler a year ago I have not used my nebulizer at all so Mommy had to take a little time to locate it and then put together the six or so parts so that it can be used with a trach. As you can see in the first picture I am not too terribly excited to have to nebulize meds twice a day for the next ten days but my parents assure me it will cure my stinky trach so I am going along with it.
Meanwhile, I am enjoying all my new toys - including the bean bag chair and the Hello Kitty eye shadow!
Peyton Nicole Smith
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