A DAY IN OUR LIFE

Many people have asked what a day in our life is like…well here it is. (Having to prepare this for something else, so thought I'd share it with you too!) Of course our schedule is a bit thrown off when we have an extra appointment or a trip to Children’s, but this at least gives you a rough idea of a typical day.

With all the various therapies and medical care involved, we certainly have a lot to accomplish every day. But most importantly, I do my best to fit in as much love and giggles for Maxwell throughout each and every “session.” :)

6:30 a.m. Wake up and get report from nurse
7:00 a.m. Give Maxwell morning greetings!
7:15 a.m. Pump (and use internet – must multi task of course!)
7:45 a.m. Clean pump supplies from throughout the night
8:00 a.m. Morning care (ointments, nebulizers/inhalers) and medicines (SEE CHART BELOW)
9:00 a.m. Work with Maxwell on different OT/PT positions
9:30 a.m. Oral therapy
10:00 a.m. Pump and make phone calls

ONE OF MORE OF THE FOLLOWING

• Call doctors and make weekly appointments
• Calls in to pharmacy and doctors for prescription refills – arrange for pick up (takes multiple calls to finally happen)
• Review medical supplies (oxygen, tape, feeding bags) and place order.

10:45 a.m. Clean pump supplies and prepare milk with formula
11:00 a.m. Get Max ready for play time by switching pump, change oxygen tank, etc.
11:30 a.m. Walk with Maxwell outside or play time inside
12:00 p.m. Get Max back on pump, change oxygen tank, etc.
12:30 p.m. Mid-day care and medicines
1:15 p.m. Get Max onto portable tank, oximeter and feeding machine and prepare for appointment.
2:00 p.m. Physical Therapy, Occupational Therapy or Speech Therapy Appointment or appointment with Primary Care Physician
3:30 p.m. Get Max back on regular tank, prepare milk, start feeds.
3:45 p.m. Pump (and use internet – must multi task of course!)
4:00 p.m. Clean pump supplies and prepare milk with formula
4:15 p.m. Inhalers and care
4:30 p.m. ONE OF MORE OF THE FOLLOWING

• Call doctors and make weekly appointments
• Calls in to pharmacy and doctors for prescription refills – arrange for pick up (takes multiple calls to finally happen)
• Review medical supplies (oxygen, tape, feeding bags) and place order.

5:00 p.m. Oral therapy
5:15 p.m. OT/PT Exercises with Max
5:45 p.m. Medications
6:00 p.m. Research CHARGE and associated issues relevant to current age (feeding, hearing, OT/PT different styles)
7:00 p.m. Pump
7:30 p.m. Clean pump supplies and prepare milk with formula
7:45 p.m. Bath and evening care (ointments, inhalers) and medicines
9:00 p.m. Rock Maxwell to sleep
9:30 p.m. Clean Max’s room, bathroom and kitchen – sanitize, empty garbage, etc.
10:00 p.m. Give report to nurse
10:30 p.m. Do Max’s laundry
11:00 p.m. Research CHARGE and associated issues relevant to current age (feeding, hearing, OT/PT different styles) or sometimes I will unwind with some scrapbooking and/or cardmaking ( much more fun!).
12:00 a.m. Pump
12:30 a.m. Clean supplies and prepare milk for the night.
12:45 a.m. Check in with nurse.
1:00 a.m. Go to bed and get ready for another day!

MAX’S MEDS

(You probably won't recognize most of these medicines, but I share it with you "Max's Fan Club" just to give you an idea of how many meds our lil' guy is currently having to take. I have this list posted on my refrigerator with his drugs and this weekend my dad was quite surprised to see such a lengthy list! I don't think twice about it much anymore because I have grown so accustomed to Max's routine. But we are working on slowly but surely reducing this list very soon, which will be wonderful!!!)

6 am
Lorazepam 1.2 mg
Morphine .5 mg
Calcium Gluconate 400 mg
Celluvisc

8 am
Albuterol 4 puffs/6 breaths each
Fluticasone 2 puffs/6 breaths each
Atrovent 1 puff
Chlorothiazide 60 mg
Metolazone 0.3 mg
Lansoprazole 4 mg
Poly-vi-sol 0.5 mg (with 2 hours of food)
Spironolactone 2 mg
Potassium Chloride 6 mg
Prednisone
Saline nose drops
*MOVE OXIMETER PROBE
*CLEAN GTUBE SITE

12 pm
Albuterol 4 puffs/6 breaths each
Lorazepam 1.2 mg
Morphine .5 mg
Calcium Gluconate 400 mg
Celluvisc
*MOVE OXIMETER PROBE

4 pm
Albuterol 4 puffs/6 breaths each
Atrovent 1 puff
*MOVE OXIMETER PROBE
*CLEAN GTUBE SITE

6 pm
Lorazepam 1.2 mg
Morphine .5 mg
Calcium Gluconate 400 mg
Spironolactone 2 mg
Potassium Chloride 6 mg

8 pm
Albuterol 4 puffs/6 breaths each
Fluticasone 2 puffs/6 breaths each
Atrovent 1 puff
Chlorothiazide 60 mg
Metolazone 0.3 mg
Prednisone
Celluvisc
Saline nose drops
*MOVE OXIMETER PROBE
*CLEAN GTUBE SITE

12 am
Albuterol 4 puffs/6 breaths each
Lorazepam 1.2 mg
Morphine .5 mg
Calcium Gluconate 400 mg
Spironolactone 2 mg
Potassium Chloride 6 mg
Celluvisc
*MOVE OXIMETER PROBE
*CLEAN GTUBE SITE

4 am
Albuterol 4 puffs/6 breaths each
*MOVE OXIMETER PROBE

MED ROTATION
Morphine Q6
Ativan Q6
Potassium 3 times daily
Spironolactone Q8
Calcium Gluconate Q6