Monday, February 20, 2006

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

5 comments:

ang said...

Goodness Gracious,
Amy I'm worn out reading it. I didn't realize how little sleep you were getting. I had an idea but seeing it on paper you are getting less than I expected. Please take some you time during the day. I don't want to see you go into burnout..Not that that will happen. I just remember from my experiences. Please be good to yourself, even if it's 15 minutes in the bathtub with bubbles and soft music, or getting your nails manicured.

Hugs to you and Maxwell.

Anara said...

Well, that was a mouth full to try to read... You really have a FULL day. I still think you need to go into the med. field once Max is in school full time, you would make a wonderful RN or Doc. As usual you are on top of it all and giving 150%, you're better than the energizer bunny and a lot better looking..... Please make sure that you take care of you too..
I Love you two!!!

Steph said...

Wow...that's quite a day! And quite a list of meds. Thanks for sharing it with us so we all have a better understanding of what you and Maxwell do together every day...

Lots and lots of love,
Steph
xoxo

Drew said...

Amy,

Wow, Mr. Max does keep you on your toes! That is quite a long day. Again, it makes me feel bad for ever complaining about having a full or busy day. Five hours of sleep isn't a whole heck of a lot either. You are amazing! Make sure you take care of yourself too.

Drew

Ruthie said...

All I can say is- love your little heart.
And I agree with everyone else when they said to PLEASE try to take care of yourself too! I'm sure its hard to let yourself do that and from the looks of your schedule, nearly impossible, but please try to at least nap while he naps or something like that. All of us including Max want you to stay healthy too.