Brett is enjoying his newly-earned mobility! He's been working hard in physical therapy every week learning to strengthen those muscles and use them to lift himself and get around. It's quite a challenge, though with him still being on a 20-hour tube feed. He has to "carry his own load" by wearing his little backpack (thanks, Annie!) because the IV pole would just fall down if he pulled that around.
We all marvel at his "flexibility." Mostly it's because his muscles are weak. Here is Mark trying to figure out how Brett's legs fold that way!
Originally, Brett was going in only to get the pH probe test done.We have new information from the throat cultures taken last Tuesday - the cultures grew a couple of types of bacteria, so our plans have changed, and he needs to have a bronchoscopy done. This is when they go down his trachea with a camera and look at the state of the insides of his lungs. They also wash a few areas with saline and get a few cultures from inside the lungs. This will be Brett's 4th bronch. While he is under anesthesia they will go ahead and place the pH probe so he won't have to "bear" that while awake. We will stay one night at the least, but we will know more tomorrow.
We've increased the chest PT from 3 times a day to 4 times a day since we know there is bacteria in the lungs growing into an infection. This helps to actually physically knock the mucus loose from the lining of the lungs so he can cough it up. He usually doesn't, but it at least keeps the mucus moving around more so it has less of a chance to sit there and collect more bacteria in one place.
Here's our regimen this week.
Enzymes - 18 pills a day
Prisolec - 2x/day
MCT oil - 2x/day
Vitamins - 1x/day
Probiotics - 1x/day
Actigall - 2x/day
Baclofen - 3x/day
Augmentin (oral antibiotic) 3x/day
Potatoes in g-tube 3x/day
Chest PT 4x/day
Pulmozyme 1x/day
Albuterol 2-3x/day
Flovent 2x/day
Table Salt
20 hour Tube feed†
Some of these medications we have to mix and prepare. We are preparing 25 oral syringes per day to administer through his g-tube. I am so thankful for the g-tube because without it we would have to somehow get all these meds into his mouth every day. I hate to even think about that!
Total Time spent managing CF: About 3 hours
It sure seems like all that you do for Brett's CF is more than 3 hours a day! But he sure is cute with that little backpack on!!!
ReplyDeleteHe is SO cute with that little back pack on! I love how he claps for himself. I'd say he has a future in gymnastics with the way he pulls through a straddle position when he starts and stops crawling. :)
ReplyDeleteI love to see him on the go! Thank you for updating this blog. We enjoy the pics and updates. Annie
ReplyDeleteSweet little Brett has already proven he's a fighter AND a winner!!!! And leave it to Mark to try to figure how things work - including Brett's legs!!!!.. you've got some fine sons Jennifer and Rob!!!
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