Oh, TOBI. We now have a love/hate relationship! I love it that it appears to be working! I hate it that it takes so long and we have to do it twice a day. Also, the ideal time between doses is 12 hours. Therefore, we have to do it as soon as he gets up and right before he goes to bed. The TOBI is an inhaled antibiotic designed to work against pseudomonas. Using the compressor we have, he has to breathe the medicine for 30 minutes. The TOBI must be done after airway clearance (chest PT), so we're pretty much making him sit in the chair for an hour morning and night.This is in addition to Albuterol in a metered-dose inhaler, once-a-day Pulmozyme treatment which lasts 15 minutes, and Flovent also in a MDI. Sometimes it takes 15 minutes just to prepare the medicines, not to mention all the washing and sanitizing of the equipment and syringes. At 15 months old, and he's got his parents sticking stuff on his face all the time. He'd rather be doing something else. If not for the g-tube, he'd have us forcing all his oral meds down, too. To some others who have CF or other CF families, this regiment might seem fairly "easy." But for us it's quite an adjustment.
We took Brett in to clinic Friday afternoon because he developed a fever after his shots, which is normal, but his breathing rate was 80-90 times a minute and his sats started getting pretty low (87-89). After an Albuterol treatment and 20 minutes of airway clearance, the sats improved to 92-94. He still felt fine during all this - we were really just being cautious. Brett is tricky, and you never really know what is going on with his body. It's like playing detective. He got a chest x-ray which looked improved from 2 weeks ago! That was reassuring that the TOBI and Cipro appear to be effective working against the psuedomonas. Hopefully that is really the case! He also had a nasal swab for viruses and a throat culture. These are easy tests that are pretty much routine and can give us good information at times. Otherwise, we're just hanging out, doing the meds for 3 weeks, then off for 3 weeks, then go back for another bronchoscopy. Here are the meds he's on now.
Enzymes - 18 capsules/day
Prisolec - 2x/day
MCT oil - 2x/day
Vitamins - 1x/day
Probiotics - 1x/day
Actigall - 2x/day
Baclofen - 3x/day
Zinc - 1x/day
Cipro (oral antibiotic) 2x/day
Potatoes in g-tube 3x/day
Chest PT 2-3x/day (20-30 min each time)
Pulmozyme 1x/day (15 min)
Albuterol 2-3x/day
Flovent 2x/day
TOBI 2x day (30 min each time)
Table Salt
20 hour Tube feed - still wears the backpack most of the day
Total Time spent managing CF: 4 hours
Even though I have some first-hand experience with all of Brett's regular routines, I still am so amazed at how many steps and how much time are involved in Brett's care. And amazed at the dedication of Rob & Jen to stay on top of everything. Your ministrations most definitely help give Brett the nest life possible. However, I also know first-hand how wonderful it feels whem he rewards you with that gorgeous smile that can melt your heart. He is blessed to have such a devoted family.
ReplyDeleteOh - and I adore this background. You do the nicest work on this blog. Of course, I guess I am just a wee bit partial toward the author(s) (seeing that I am related to them - LOL).
ReplyDeleteI really don't see how you two do it!!!! I just pray that science will someday find, if not a cure, at least a med that will make CF patients life more comfortable.
ReplyDeleteI saw a documentary on Public TV last night where they are growing body parts in the lab right there at UNC. They take cells from the damaged organ - sprinkle them with some powdery look stuff that tricks them into thinking they're in the embryonic stage and it forces them to regenerate into a new organ .. one 76-year-old man had esophogus (sp) cancer with no hope for cure. He was offered to try it - they grew him a new esophgus - inserted it - and he's been cancer free for two years . . .and he's one happy camper! Now if we can find a cure for CF - and grow him some new lungs. . .
I know I'm dreaming . . . .
Several labs are working on regenerating muscles, fingers, and other body parts for the war wounded.(the soldiers call the powder they sprinkle on it 'pixie dust') For one man that lost a hand, they took the hand off a cadaver and, with the aid of cell regeneration, placed it on the injured man. Even though the hand doesn't function 100%, it works well and it's definitely better than NO hand!!!
While I was watching that, I just sent up prayer after prayer for our Littlest Angel.
Hang in there! I know this is a challenging time for you all. Brett is lucky to have such caring and dedicated parents. Dylan is on multiple meds now due to a cough, so I know what you mean about all the time these little fellas have to sit and do meds.
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