Tuesday, November 24, 2009

I am tired. The end.

Tonight as I sat at my computer putting off my nightly routine, I did some thinking. First of all I was thinking that maybe some 'medical' mom's might have some advice. And second... I just wanted to actually document everything I do at night.... so you can see why I want to rebel some days. The advice I am wondering about it maybe how to speed up the process... so any of you mom's that do this as well.. send along any ideas.

Keep in mind this is JUST for Josh. Not what I do for the other boys.

First of all... you can usually find a sink of bottles soaking every night.

Next... this is just my corner that used to have lot's of G-tube supplies in it. It is now completely dedicated to feeding and medications only. When we had to do all that re-arranging to start the night feedings, I put all G-tube supplies in his room. Now we are over-run with a pharmacy of meds.
This is Josh's morning meds. I get them all ready the night before. The only difference between these and his night meds (that I get ready in the afternoon's usually) is that in place of the green syringes there is white ones. The small, skinny syringe is a med I give 4 times a day.

Here is the bottles I get ready every night before bed. Josh's formula only lasts 4 hours at a time so I have to get up at night to add more formula to his bag. I make the formula ahead of time since I am so tired at night. Makes it easier.

My trusty timers. I set the timer so I can add formula before the bag empties out and the beeping wakes up Josh. Also it just reminds me when I added formula last. The smaller timer I finally bought so I could keep it with me easier since we do leave the house. LOL.

I know this is blurry, but this is my cell phone that has two alarms set on it. One goes off at noon and one at 4pm everyday to remind me to give Josh the med he has to take 4 times a day.

This is what I set out every night for Josh. His clothes he will wear the next day, the dressing change stuff, creams for his G-tube site, his backpack he wears every day, a new feeding bag, and LOTS of tape to keep things in place.

And here is Josh sleeping peacefully. This pump and me do NOT get along lately. As you can see in the picture the baby monitor is right ON TOP OF the dang pump so I can hear it and get to it before it wakes up Josh in the middle of the night. Sometimes I succeed... mostly not. But I am working on it.
Now... keep in mind I do all this stuff every. single. night. And you know what? It still takes about 20-30 min to just get him out of bed, medicated, hooked up to his pump/backpack. That is why I do all that the night before. I have no idea how to make it go faster. And some days I just want to rebel and not do all of this every. single. night. But alas.... this is how it will be until at least February. Wish me luck in surviving.
(Now don't even get me started on how long it takes to get Josh bathed, dressed, drugged, ect at night.......at least 1 1/2 hours right now)


Chantel and Brian said...

I admire you big sister. You've been dealt a plate that keeps getting heavier but yet you bear it will. Thanks for your amazing example. You are quite the trooper! Good thing Josh is so adorable to make it all worth it ( :

Tanya said...

Wow. No, I think its best to do it all at night. What WERE you doing online? LOL! :)
I love how organized you are. Really.

Jessica said...

You are such a great mom! I think its just one of those things...the only answer in making it be better is to pass the job to some one else...(I dont think that is so much better) I know its discouraging, tireing and some days unbarable. But at the end of the day it was so worth it. YOU are keeping him healthy! Keep up the good work! You are AMAZING. If you ever forget that please call me so I can remind you.

PS... What is that green med??? I would be happy I have a G tube if I had to take that. 8)

Alice said...

Wow! You are a trooper and Josh is so lucky to have you. Hang in there ;)

Amy said...

Let me just say how great you are, and Scott of course. You guys have to deal with so much more than most parents and you do an awesome job. You have adorable kids that you take such good care of. I love ya big sis and I hope to be like you some day. See you soon!!

Cate ;-) said...

wow! it takes such a long time of your day! Hope Josh gets better as he grows... XD

Heidi said...

WOW. I would never be that organized. You do so much and I know that your kids will appreciate it.

Deb and Spence said...

That is crazy! I wish I had some ideas for you, but you seem to be doing everything great. Getting things ready ahead of time definitely is the way to go. I don't know how you do it every day. Totally understand the rebelling thing!