Wednesday, August 26, 2009

Goodbye Joey!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

last night the medicine port on Alex's tube popped open and 525cc of water slowly dripped out onto Alex and his bedding at 55cc per hour. Alex woke up about 3 times, but really never cried, just would kind of complain then go back to sleep, so we never checked on him :( When I went in to his room this morning my sweet boy was soaking wet, his feet were all wrinkled, and I about cried. I'm so glad he had warm pj's on, but I know he must have been cold. So one more reason not to like Joey. Another reason is Alex getting all tangled up in the tubing at night, doesn't seem safe to me, and of course it just isn't natural to be getting fluid pumped in you all night long. because he didn't get his water last night, I thought I would see if I could get all 525cc in him during the day, along with his peptamin jr bolus 4 times a day. It was also the day nutrition comes so I could talk about it with her, and get her thoughts. The good news, Alex tolerated the extra fluid during the day, the good news the nutritionist thought it was great! So goodbye Joey! Into the closet you go. I will still pull him out if Alex is sick and needs extra fluids, but hooking up at night is a thing of the past!!!!!!!!!

For those that care, and others who bolus and deal with mic-key buttons here is our new routine.

Alex gets 4oz of water in the morning with his prevacid, and miralax,

then comes his food, and 120cc of peptamin jr (1 60cc bolus wait 10 minutes, then another) about an hour after his feed, he then gets 4oz of water.

3 hours later more food, and the 120cc bolus (1 60cc bolus wait 10 min, then another)

right before nap about 30 minutes later 4oz of water

3 hours later food and peptamin

4oz of water

3 hours later food and peptamin

4oz of water

right before bed 4oz of water with prevacid

It looks like a lot, but his feeds only take 15 minutes tops, usually 10 minutes, and the 4 oz of water take maybe a minute. So its fast!

The changes this brings to us:

No wrapping up in tubing at night

No waking up soaking in urine

No worrying about finding zip up or button up pj's

Traveling is easier

If he cries at night we don't have to worry about unhooking him or not, we can simply pick him up!

I needed this! Goodbye Joey~


Our Journey said...

bye bye joey!! A BIG CONGRATS!!!

Anonymous said...

Great news, Jessica. I am so happy for Alex and for you. It has to be a relief for you and for sure is a great blessing. I love you! Aunt Mary

The VW's said...

WOOHOO!!! This is great! I hope that he continues to tolerate this change!

I hate feeding pumps! They beep for every little reason! It's difficult to just pick up your child, like you said. And, every once in awhile there is a tubing malfunction and your child gets soaked in bed and doesn't get his nourishment! Such a pain! I am cheering for you and this new progress! YAY!

Kelly said...

Perfect Timing!!!!!



Sherry C said...

Amazing!!! my Ashley's Kangaroo pump is nicely stored away in my basement. She stopped using hers just before her little brother was born 4 months ago too. Makes life so much easier because night feeds are such a pain. The soaking wet diapers, the waking at night. I would hate to go back down that road.

Fabulous news!!!! I hope your getting as much rest and relaxation as possible,

Alicia said...

What great news!!!!! HOORAY!!! So happy for you guys!!!

I can't wait until we get to say goodbye to Joey too!

Brandi said...

Yahooo! That's HUGE Jessica! Amazing news after a not so amazing day yesterday.

I've been thinking about you all day long. Give Bird an extra big hug for me.

Steve+Marie Douglas said...

WELL PRAISE THE LORD!!!! that is wonderful news... one less hassle for you & sweet Alex!!

Christine said...

Good news alright! So if i understand this,he doing oral feeds and bolus feeds. No more dependency on feeding pumps?? That's awesome! what a sense of freedom.

Finding Normal said...

That's great news! We've never ever had a pump. How do you know how much water to give him? Addison gets 2 oz at each feed to water down her new boost stuff because it's too thick to go through the tube and that's how much water they said to flush with, so she just gets a small flush. But that's a lot of water for a little boy! (not telling you you're wrong, I'm saying I'm clueless about my own kid's water need!)

Kelly said...

Joey is living in our closet too. . .where he belongs. You brought back lots of memories. I can't tell you how many times max woke up soaked in smelly, sticky pediasure. I even check on him during the night, but lots can happen in a four hour stretch. He would never wake up. His carpet is so stained under his crib. Not worrying about a tube around the neck at night is wonderful! Great progress Alex! We only give Max 4 oz of water all day. Yikes! Kelly F

Michelle said...

Another step forward (or should I say LEAP?!?)! Just in time for a baby as well! I'm so thrilled for you and Alex!

Lorelle said...

So, I've been following your blog for over a year but I don't normally leave comments. I just have to now.
First of all, I think you are an amazing mother. I admire your strength.
Second, I am a Nurse and hearing Alex's feeding schedule makes me tired. I don't know how you do it!
You're def. super mom!

Hang in there.. only 2 more weeks. Can't wait to hear about the baby's arrival.

Love to you from Birmingham, Al.

Jason and Vanessa said...

YEA I'm so excited for y'all! Good job Alex!