We are just a family of five...three boys, a mom, a dad, a hamster, and dog. Welcome to our crazy world. Our adventures will make you laugh, cry, and pee in your pants...

Sunday, September 27, 2009

I'm a LAZY mama...
I'm still giving Isaac baths in the kitchen sink...

is that wrong??
It's not my fault that he still fits...
I'm just traveling up and down the stairs all day...
and my tub is HUGE and he just falls over when he's in it..
and it isn't sanitary to walk into the boys bathroom...
what can you do?

Now...onto the important part of this post.
I am the SOLE caregiver of Isaac.
Joe MIGHT change a diaper on the weekends...
but, he has NO IDEA what meds Isaac is on or what he eats...
how much or where everything's at.
SO...if I was ever sick, in a car accident...anything...
no one else knows what to do.
Thus...here are the directions for taking care of Isaac.
(please show Joe where this post is at if he's ever in need)

Beside the kitchen sink are the syringes...
I wash them about every 2 days.
yep...that's how many we go through.
After they're dry...I put them in a purple plastic basket beside the fridge
(in case he doesn't know where to find the others)
Also beside the fridge (hidden away from visitors view)
are Isaac's meds.
yep..and those are just the ones that aren't refrigerated.
Seriously...this isn't to brag about all that I do each day (even though someONE needs to be reminded constantly)...but, I need all the info in one place for emergencies.

SO...here we go:

6:00am...Isaac is asleep. Hook up feeding pump. The bags are in the closet under the stairs. The pump is set to deliver 215 cc's at a rate of 330cc's per hour. Add ONE full can of Nutren Jr. with Iron and 2 oz of water (add the water or he can't poop). You have to "burp" him through the g-tube before starting his feeds. Change his diaper while he's asleep if it's full...or, he'll pee right out!

7:00am--the feed is finished. Flush him with a full 10cc syringe of water. Remove the g-tube extension.

8:00am--he usually wakes up talking.

9:00am--after taking Eli to school...time to give Isaac a bath. Once he's out of the bath...dry him all the way. Then, rub lotion (in the basket by the couch) all over his legs, arms, hands, feet, face....every little crack. If he has bad eczema patches, put Mometasone cream on those spots. Clean under his mickey button with a q-tip...then, put a split gauze under it, and tape it with a small piece of clear plastic tape (all those supplies are in a zip lock bag in the same black basket by the couch)..that's also where the special creams are located.

9:30am--start getting his feeds ready for next feed. If he's having a good day: he'll get 4oz of Nutren Jr (no water added)...then, in a bowl, put in about 4oz of yogurt. Then, add one scoop of duocal (for calories)...and then add a little rice cereal (or wheat cereal) to thicken it up a little (he isn't swallowing thin foods very well). His bibs are in the guestroom in the top drawer of his dresser. If he's having a bad day....NO foods by mouth. He needs the same feed as his 6am feed...a full can of nutren jr. and 2 oz of water. BURP via g-tube before starting either feed. BUT...before feeding, he needs his morning meds:
Prevacid---put 4cc's of water in a syringe and then in a cup...add a prevacid tablet, ,let it dissolve and then draw it back up in the syringe. (this is beside the fridge)
Zyrtec--5ml's (also found beside the fridge)
Baclofen--0.4ml's (in the fridge--white med)
Enalapril--1.0ml (in the fridge--blue med)
**Important to flush each med with about 5cc's of water...between meds. So, also draw up two 10cc syringes of water to flush after each med.

10:00am--now...you're ready to burp him, give all those meds, and feed him.
It's been taking about an hour to feed him that yogurt by mouth, put him in the bouncy seat, put the bib on, and turn on Yo Gabba Gabba if you want him to eat. You give him a bite of food, then about 5ccs of milk in his tube...keep alternating food and milk until finished. Flush milk with 10ccs of water when finished.

11:00am--clean him off good. He'll have food all under his chin and you'll probably have to change his shirt.

2:00pm--he needs Baclofen again (0.4mls--white med in the fridge) and start another feed. He's usually tired at this time...so, it's feeding pump feeds. ONE full can of nutren jr. and add 2ozs of water (and if he hasn't pooped today, add 1/2 capful of Miralax to the milk in a bottle, shake it up, and then put it in the feeding pump bag). Remember to clean out the feeding pump bag after EACH feed. Also, remember to flush milk in tube with 10ccs of water.

6:00pm--Needs meds and another feeding.
Dont' forget to BURP through tube before giving meds.
Cut one baby aspirin in half, dissolve in water...and draw up in syringe.
Also needs Baclofen (0.4cc'c white med in fridge). Draw up 10ccs of water to flush between meds. If he's happy and awake...he can eat by mouth. Put 4 oz. of nutren jr. in a bottle, and put a jar of babyfood (stage 2--small jar) in a bowl. Add 1 scoopful of duocal and rice cereal to thicken it. Feed as above...about 5 ccs of milk, then a spoon of food...alternating between both. If he's having a bad day...feeding pump feeds again. (full can of nutren jr. and 2ozs of water)
Flush tube with 10ccs of water after eating and clean feeding pump bag.

10:00pm--night meds:
BURP tube before adding meds.
Prevacid--1/2 tablet dissolved in water and then drawn into syringe
Singulair--1 tablet dissolved in water and then drawn into syringe
Baclofen--0.4mls (white med in fridge)
Enalapril--1.0ml (purple med in fridge)
he should be asleep or close to it..so, it's feeding pump feed. ONE can of Nutren Jr and 2ozs of water. Don't forget to flush tube with 10cc's of water after feeding. You can throw the bag away now...we'll get a new one in the morning.

**once he's asleep...put pulmicort in the nebulizer and let it blow in his face. If he's awake, put the mask on the nebulizer and hold him in your lap while he gets the breathing treatment.
**if he's sick or wheezing...he also gets xopenex every 4 hours as needed. This will go before the pulmicort.
**if he's sick and has a fever...he gets 5ccs of Tylenoyl alternated between 5ccs of Motrin.
**if he has an ear infection...he has drops to put in his ears (5 drops 4 times a day)
**if he has a runny nose...he can have 5cc's of benadryl (but call the doc, an ear infection is coming)
**check his sats daily. if he's below 92, hook him up. It usually only take 1/2-1 liter. The cloth tape for his cheeks is in the black basket beside the couch.
**if he feels warm...the thermometer is in the black basket...just rub it over his forehead.
**if he isn't feeling well...NO MILK at all. only pediatlye all day. (8oz each feed) Or he'll spend the day throwing up and wretching.
**sometime during the day....you need to work on therpies (pt, ot, and speech)

CHANGE his diaper before putting him to bed. (use the Huggies overnight diapers). Cover him up (even though he'll kick off the covers) Make sure the ac is turned down to 68 (or he'll wake up sweating and throwing up).

and sometime in there could you also take care of the two other boys, help with homework, pay bills, clean, make tutus, update blogs, call friends and family, cook dinner, tidy the house, clean the pool, give the dog and treat, take a shower, shave your legs, and keep that chipper attitude that you always have? (ok...now, I might be rubbing it in a little...but, just keeping it real)

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The Portas said...

The first line of this post was, "I'm a lazy mama." Well, that obviously isn't the truth! Holy cow, AMAZING mama, that is a lot to keep tabs on. I think I need a nap now.

Isaac is one lucky little boy. You take such amazing care of him.

It's actually smart to have a list like this somewhere. Not that we have anywhere NEAR the daily "stuff" that you have, but every once in a while I write down Elijah's schedule...you know, just in case.

Have a good day!! xo

Sarah said...

Oh me... (really oh you) This list is amust as only you... Isaacs amazing Mama has perfected it to exactly what Isaac needs.

Wendy said...

Oh Kathy,

I love you! And I think you just posted most of my day, too! Can I copy that and take it to each of Emma's therapists??? I swear I love the part where you mentioned that sometime during the day you need to work on the therapies! I've always felt like such a failure, especially when the therapists tell me what I should be working on, and all I can think is "how can I fit THAT in, too? I'm barely staying afloat as it is!"

Hang in there, Honey....just remember that I'm right here with you. Sometimes it's just nice to know that you aren't alone and that someone understands. "A lazy momma," you aren't! :)

Lots of Love & Hugs,

Wendy (& Emma, too!)

Abby said...

POOR JOE!!!!!!!!!!!!!!!1

jencooper said...

Wow....look at this! My school is finally letting me comment on blogs. We shall see how long it lasts.

Whew. I am tired. Seriously. I am.

You know what is weird? We have been on Enalapril for almost 2 years and we have never had to keep it in the fridge. Then, we were given a prescription that was just filled by our friend that had just been filled and she was taken off Enalapril. (Did that even make sense? Anyway, we cleared it with our card to take it since it was a full bottle that would save us about $100) My point is that it has to be refrigerated. Odd.

If you couldn't tell, I am operating in a Benadryl fog today as my allergies are kicking!

I hope Joe made a copy of this! You are amazing!


Amber said...

If you are ever in an accident or abducted...tell Joe to call me.
:0) I'm NOT saying he COULD'NT do it...I'm just saying. ;0)
I hear ya momma. I'm begging Oprah again...please have a show on CHD and bring all of us bloggin mamas together!!!! :0)

Grandma Judy said...

Now, how do you find a babysitter that can do these things? When Isaac is visiting me, Kat has to draw up the meds, get the foods ready, and can not be gone any longer than three to four hours. It's sad with a Nevada heart baby and Tennessee and NC grandparents. Hang in there Kat.....just save time for Chris, Eli, and yourself....and Joe too!

Lee Family said...

Don't forget to add some time for shopping :)

Girl I feel your pain I do everything you do except clean the pool and feed to dog :)

After reading this post I am exhausted. I did not realize how much we do.


Kelly said...

Dang girl friend! Taking care of Isaac is a full-time job! He's one lucky little boy to have a Momma so on top of things! I don't know how you keep everything straight. You should be Momma of the year!

cindy said...

I've been keeping up through FB, but was thinking I was missing things and boy, was I right! I would never know that you really do things all day and don't just eat bon-bons while watching soap operas! ;) Seriously, your days are crazy and I have no idea how you do it. The list is a GREAT idea! You amaze me!

Lots of love,


Vanessa said...

WOW...you definintly are a super mom! I am tired just thinking about your day.