Month of May

Since the end of April, many things have happened as far as Jason's health. Just like after the set of "bad" appointments in December 2016, we have gotten through April's "bad" appointments and things are looking up. I think so...or maybe I've just gotten into our new routine and I'm comfortable with it all!

Trach/lungs: His chronic infection persists, despite our new regimen of antibiotics. Jason started taking bactrim on April 25 for two weeks, then he took doxycycline for two weeks starting on May 9. After 2 weeks, we switched back to bactrim and will continue alternating. There is no end date for this. I feel the bactrim works better though! We got equipment for the nebulizer, teaching from our respiratory therapist, and gentamicin from a specialty pharmacy in Texas and started this twice a day antibiotic on May 4. I can't believe it's almost been a month and I just ordered a monthly refill yesterday! He got a trach change after 4 weeks back on May 17. There was some trauma from placement and there was some blood tinged sputum, but nothing that alarmed us too much, like back in February (see blog) The next planned one will wait 6 weeks and be on June 28. They want to keep putting a new clean one in frequently and it gives them access to do a broncoscopy to check everything out. As of today, the cough assist machine still brings up yucky, smelly, and yellowish sputum. The good thing is, Jason doesn't really have any of the terrible side effects that antibiotics can give a person that we are aware of. We are also giving tylenol 3 times a day for prevention of fevers that could deplete calories in his body. For this reason, we don't really have documented afternoon fevers, although he has still gotten them when tylenol isn't given in time.

Change in food plan! This has gone so well. We took a couple nights getting up to full ordered tube feeding. We started night time continuous over 10 hours food back on the night of April 26. The pump stays in the bedroom and doesn't interfere with anything-just makes a slight noise. We try to time it to end around 7:30 in the morning, altering it depending on appointments or work meetings.

Wound care- Home health did come to our house starting on May 2. Sharon, our nurse, came twice a week for 2 weeks and has switched to weekly, ordering and sending supplies for me to do changes daily, if needed. By the time she got to our house to assess, Jason had 7 wounds.

At the doctor's appointment on April 20, he had 1.

When I wrote the April 30 blog, he had 5.

It all happens this fast!

We are covering all his dressing with different types of fancy dressings (for you medical people, hello duoderm and mepilex borders-just love those things!) They kind of act as a second skin. We use medi honey. You may remember reading back on April 30 about honey being a natural healing ointment-article here. I'm sure the medi part of the honey adds crazy cost HA! but I am a huge fan of the natural of it and that it was available for us to use. We put honey on the eschar areas, which at this date is only present in 3 and is slowly going away. Eschar is the least healthy wound condition, necrosis, which is the death of cells in tissue. It appears black in color. This is due to a decrease in the blood supply to the wound. The dead tissue damages the healing process and allows infectious microorganisms to develop and proliferate. On pink areas, the healthiest of wounds, we put neosporin, and place a dressing. Dressings can stay on as a second skin from 5-7 days (depending on the type of dressing), but they tend to roll up and not be effective after a few days because we are constantly moving and all. They did get worse before getting better for sure. It will be a slow process. We have been to an appointment with physical therapy and our wheelchair vendor on May 30 to get documentation to insurance to add pressure relief to the power wheelchair padding. We have implemented an egg crate on Jason's side of the bed. We have been in contact with Emory to try and get a pressure relief mattress through insurance to see if that helps as well. We are doing everything we can-it will just take time. Typical Jason-he hasn't and doesn't complain about it. Part of this could be decreased blood flow decrease pain sensory in those areas.

Thank you everyone for your love and support. All the texts after the blogs from last month, advice, just "listening" to me vent or complain has all helped. We appreciate your love. We will have a few weeks "off" in June before our next few appointments:

June 22 neurology appointment

June 28 trach change appointment