March 25, 2016

Cystic Fibrosis Can Be A Full Time Job

3am, hear pump beeping. Check clock. If it's earlier than 3am, go check to see if he rolled over. If 3am, it's probably ok. Go back to sleep. He's coughing now. Please don't let him throw up or reflux everywhere.

5:15, alarm goes off, Azer wakes up to go to the bathroom.
Get up, Run with him for 30 mins, or run/walk for an hour. Encourage him to try to run harder/faster.

6:30 Azer starts vest and nebulizer cups, and morning G-tube feed.

Getting Some Homework In During Morning Treatment

7:20 am As Azer is brushing his teeth, I fill the pill box. Make mental notes of each bottle and what is getting low, and need to order soon.

Take kids to school. Remind Azer to drink liquids!

Start vacuuming house. Vacuum everyday in case there is dirt, or dust that could aggravate his asthmatic component
Put mask, nose attachment, and spacer in rubbing alcohol, swap nebulizer cups in vinegar.
Rinse nebulizer cups and put in sterilizer. Make note of level of distilled water.
Take Aerobika apart, clean and put in sterilizer
Take things out of rubbing alcohol and air dry
To help me remember to take Tobi, albuterol, and spacer with me to school later, put in ziplock bag

Start cleaning kitchen. Let cleaner sit in sink drains in case there is Pseudomonas in there
Let cleaner sit on kitchen floor spot of formula dripped
sterilize dining table in case there is staph coughed on it, never know it might make him sick.
Clean their bathroom. Sterilize his toothbrush, let cleaner sit in drain, clean his toilet, notice there is remnant of fatty stool. he didn't eat much for dinner, I don't know why he's not absorbing like he should.
Pass by his room. Grab the empty formula bag and empty formula boxes. Take to kitchen to recycle, clean his G-tube extension with hot water.

10;45am Time to go to the school. Grab ziplock bag. Make sure Tobi is in there. Nurse calls him into the office. Albuterol, 10 Aerobika blows. I do a push on both sides of his chest, he sounds like crap. He does his Tobi and he goes to lunch.

I'm free till 3pm! Keep track of copay programs, insurance, what needs to be printed, and sent in.

One Week's Amount of Pills

3pm, drive to school, pick up kids. Home by 3:30. Start Aerobika. Formula time, bolus feed. Make mental note of when I need to order formula next. If the pill box has oral antibiotics, take the vitamin out or he might vomit. Ask how many times he's had a bowel movement, even though he obviously had a fatty one last night. He can get constipated in a day. Use judgement to decide if he needs Miralax or not.  Try to get him to clean  his room. (Way harder than anything else here... lol)

Bolus Feed

5pm, Make Scandishake in blender. Boost still hasn't gotten here. Why? Remember to check Live 2 Thrive program, and check status. Need more milk, using about a half a gallon a day.

6pm, Azer needs to eat dinner. Make sure dinner pills are out of the box. He eats dinner does the Scandishake as a bolus.

7:30, start evening nebulizers.

Cystic Fibrosis Weapons

About 8, start CPT. Husband has been helping me with this lately, as I have had sternum pain (from doing it so often? I don't know) Pushes on all sides of his chest while he huff coughs. Aerobika, Symbicort, Nasal Spray, Tobi. Make sure Azer brushes his teeth, or he might get oral thrush from steroids.

Make sure nebulizer cups are in vinegar.

Start night time feed. Make sure he takes his pills and they're not sitting on the night stand. Tape him up so we don't end up with two possibilities. Possibility #1, he rolls over on it, if no one hears it beep, he doesn't get the full dosage of the night time feed, and he desperately needs those calories. Possibility #2, it becomes disconnected somewhere and he may or may not wake up to stop the pump, and we end up with soaked clothes, soaked bed, floor, etc.  Make sure bed side fan is pointing at his face. Feel scared that he feels the need to have air blowing on his face, possible night time low oxygen. Hope we don't have to deal with oxygen soon.

Why do all of this? If one thing I did will make him a little healthier, help him live just a little longer, spend more time out of the hospital, have more assurance that he will outlive me, then it's worth it.

You can help make our day a little easier by helping fund CF research. You can join us at our Great Strides Walk, or help raise money by clicking here. Thank you :-)

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