A day in OUR life----

The last few months have been such a blessing for us to be home...Although there have been many times that I thought I have had more interaction with people at the "Resort " than I do at home...

BUT...to say it has been easy.....would be untrue!

In ALL things I am thankful for IT ALL....in Blessings and in Trials...God is good through it all!

You really find out about the stability of your marriage and the support of your friends and family; when you endure the things that have come our way!

One of the things that I have learned over the past few months is... God is always there no matter what, when or where...when NO body else is or when it seems like the walls are crumbling down.

Here is what a day in OUR life may look like...

Each night is different....we may be up for hours, we may not be....a new day ...Every day!!

5-6Am Avery's Start Meds( 3 medications)
6 AM ---Get Andrew up & ready for the day ...he needs help in all areas of this process
6:50 ---Andrew leaves for school
7:00 ---Finish up meds for Avery
Andrew's bed gets stripped and in the washer( if we remember; before being pulled to do something else)

Sometimes Avery may already be awake...
In that case...We....Change, temp, suction, bag, console.....ect ect

8Am---Joe gets ready for work and is off at about 8:30-8:40---Thanks Joe for all your help this AM!!!
(Joe usually starts the 6 AM stuff and gets Andrew off to school)

8Am---Meds Start(5 medications)
Each medication time takes awhile and sometimes longer if he is gagging, retching... ect
All medications go in his J-tube(except one med @ 5 PM)

Change diaper again( check his urine for glucose levels ect)
Give inhalers(through ventilator)
Give nebulizer (through ventilator)
Bag / Suction...ect ect

9AM---Make sure other kids are getting ready for the start of their day as they are home schooled!

After 8AM meds are completed ...we start feeds (about 9AM)
Avery gets about 10-13 mls of feeds over 5 hours long!

Many Many Days Avery needs suctioning SEVERAL times in the morning!!!

Avery's AM cares consist of....

Washing him from head to toe
Hair , back, face, hands, fingers, toes, feet, legs....ect ect..
Cream on face, lotion on body, G/J tube care and dressing changes, ointment applied, change 02 probe , clean probe, mouth care, Trach care----turn 02 up for that , bagging, suctioning, instilling in trach water( so his secretions aren't so thick....getting him dressed (which is not always an easy task), putting AFO'S on...(AFO"S on as tolerated)

*Avery is getting new hand splints soon!!!

*Avery needs ......SO many things throughout the day that I would be HERE all day telling you!

*Continuing giving feeds( I slow push them)

*I also conduct school.....during the day with 2 of my kids!!!

*Between 10-11 Avery's TPN is complete( unhook his line) flush his Port
*Avery usually gets up in his chair....or mom holds!!!

1PM--- Meds(2 medications)

Avery has alot of pain so consoling throughout the day with rubbing belly and chest PT
2PM---Inhalers(through his Ventilator)

* Re-stocking Avery's supplies ordering Avery's supplies...

*Ohh yeah my house.....that needs attention(not sure hen...ha ha ha)

*Avery has therapy 4 times a week...
*I administer a blood product twice a week

*Avery has Trach care 1-2 times a day

*Avery gets his Trach changed monthly (or more if needed)

*TPN --take out of Fridge about 2-4PM

*Andrew gets home at about 4:15----Good times begins with him(it takes 40 minutes sometimes to get him to take a coat off) !!!

5PM---Meds(3medications) 2 in the J-tube 1 in the G-tube

*Suctioning/ bagging ----whenever needed throughout the day

*Re-positioning Avery --throughout the day !

*Doing school work ---Throughout the day!!

*Medications need to be measured and drawn up ----

*Syringes need to be washed---

*TPN hooked up....AT ABOUT 6pmISH

Joe is home about 5:30---
Dinner time, catch up with everyone...clean up make sure Andrew stuff ready for the next day
Joe will read to the kids if possible---they all love this...

Are any of you tired yet!?!?

8PM---Meds(4mediations)

*PM Care ---IS Much of the same as in the AM.......

*Inhalers, Nebulizer treatments...Suctioning...Trach(if needed)
*In the middle of my day ....at some point I may take a shower!!!!

10 PM Med(Only 1)

Avery has PRN orders for medications as well....so as needed he gets more than the above!

We usually can go to bed about 11P-12A----It ALL depends...Then it starts again!!!!

Praise God for Each New day..Count your Blessings...I am Thankful for all that I can do to keep Avery home!

Avery has NO schedule ---So he sleeps when he wants ...how he wants!!!!

Avery continues to have pain, seizures , de-satting episodes....

Until this point we have only had ONE consistent nurse...we are happy to have another one hop on board this week!

I have appreciated everything and anything anyone has done for me or my family....