Tuesday, September 2, 2008

Gavin's Things

In following suit of some wonderful mommies in blogland, who have children with special needs, I am going to share some of the equipment we use with Gavin. It's a great way for us to get ideas of what may be helpful to use and it's a way to get to know each other and our children better.


Those of you who don't need to use these items may be interested anyway. I talk about some of these things on this blog and you may be interested in what some of it looks like. I'm not going to take pictures of everything and I can't take pictures of all of the things since some have yet to come in, like a wheelchair. (Which I am not looking forward to using at all! We get enough weird stares when we are out and about in a stroller, so I can only imagine the looks of pity that we will get with Gavin in a wheelchair! Again, I don't know why I care about what others think, but I do.)

Anyway, here are some of them:





This is the nebulizer machine that we use to give Gavin his breathing treatments 3 times a day. We use the little blue tool on top for percussion on his back and chest to try to keep his lungs clear. These items and, of course, God's grace have kept Gavin out of the hospital for almost a year now!!! We are SO thankful for this!




This is the pulse/ox machine that we use to test Gavin's heart rate and how much oxygenation his body has. We used to use it daily, but now just every once in awhile to make sure he's where he needs to be. Gavin has a pacemaker, so his heart should be regulated by it, but you never know. We mostly check for his oxygen level since he's had issues with this in the past.




Speaking of his pacemaker, this is the machine that we use to send info from the pacemaker to University of Michigan hospital so that they can make sure that it's doing what it's supposed to. We hook it up to our phone line and then place the round paddle over his abdomen where the pacemaker is in his body. We do this every 2 months. As the pacemaker gets older we will have to do this more often because the batteries only last around 5 years, so they need to know if they are wearing down. Gavin will need to go back to U of M to have the batteries changed when they are getting low. Hopefully this will be the ONLY reason that he will have to go back there for a LONG, LONG time!




This is the backpack that came with the feeding pump that Gavin uses. It holds the pump and the feeding bag. It's very nice because it keeps the food cold with a pocket for an icepack and it's very discreet looking.




This is what it looks like inside. The bag holds Pediasure which is his only form of nutrition at this time. We are still somewhat working on getting him to like food by mouth. This may take forever! He is switching to another form of nutrition soon. It's something like pediasure, but it has more calcium, zinc and Vit B, which he is not getting enough of with the pediasure alone.




This is Gavin's G-tube. He had surgery last year to place it directly into his stomach. This is the tube that I accidently pulled out awhile back and felt SO bad about doing it! The feeding bag has tubing that hooks right into the tube going into his stomach. Gavin never even tastes a thing! Which, unfortunately, he's just fine with! In this picture you can also see some of Gavin's battle wounds, or scars from the many surgeries that he has had. Not to mention his adorable belly that I love to tickle! :)

These are all of Gavin's medications, minus the ones for his breathing treatments. Those are all the syringes that we use each day for giving the meds. Some of the meds are liquid and ready to give, but 3 of them need to be crushed and added to water. You can also see a can of Pediasure.


This is Gavin's crib that he sleeps in. He shares a room with Caleb. Lately he hasn't been the best roomate because he wakes up 'talking' and wanting to play with Caleb early in the morning! Most of the time Caleb can just sleep right through it thankfully!

This is "Gavin's corner" in our living room. This is where he hangs out and plays with his toys during part of each day. He loves his toy bar that his physical therapist brought for him to use! He's not very good at grabbing for toys yet, but he does when they are right in front of him on this bar.



This is Gavin's mini-recliner chair. Isn't it adorable?! He's really comfortable in it and seems to like sitting in it a lot!

So, there you have it.....more of a day in the life of Gavin!

"It is written, 'Man shall not live by bread alone, but by every word that proceeds from the mouth of God.'"



8 comments:

Cari said...

What medication do you use in the nebulizer? Gavin's looks much nicer than mine. Mine is gray and ugly. I like the color of his much better. I use Albuterol in mine and it's with me always. It's kind of like a 3rd lung.

Cari

Inspired said...

First, wow - that's a lot of stuff. Second, thank God those things are available to keep him healthy. Third, God bless you for being such a great mom!
Love,
Julie

hennhouse said...

I agree with Julie. That is a lot of stuff. I started crying when you mentioned the wheelchair. Esther-Faith's chair "grew" when we were at the hospital on Friday. They just hoisted it onto the bed (she was in my lap) and they went to work. Now her feet don't fall off.

I've seen a lot of these posts today. I know what Esther-Faith uses and what equipment is necessary, but I guess I don't give it much thought anymore--it is all so much a part of our lives. And like Julie said--thank God for all of the advanced in the medical fields that these things are available.

You are ever more in my prayers.

Jessica mommy to Alex/ RTS said...

I must see a picture of him in his recliner!
Thanks for the peek into your life.

Tamara said...

Yeah Alicia! I am so glad you did this too! I love looking at everything that you use. I see familiar things like the giraffe, scars on tummy, same pump and Mickey button... isn't it funny that we are connected by all this, a bond that two mommies with normal kids would never understand! I am so thankful for your friendship, like Jess said, thanks for the peek into your life! Tam

The VW's said...

Cari,

Gavin gets Albuterol as well, plus Xopenex and Pulmicort in his nebulizer. They are like a third lung I would imagine, although I wouldn't know having never had lung issues. Thanks for the insight! I'm glad to know that doing them does make a difference in how Gavin must feel after getting the treatments.

Take care!

Alicia


Julie,

Yes, it's a lot of stuff, but like you said, it's great that these things are available to us! Thanks for your kind words and support! I'm glad to hear that Rena is glad to be back in school! And, doing math for fun?! Crazy kid! Give her a hug for me!

Love,

Alicia


Hennhouse,

What's your name BTW? Thanks for your prayers! I'll be praying for your sweetie as well! And, you are right, we do just get used to all the extra stuff and what we need to do with it all! I'm sure that will be the case with Gavin's wheelchair as well.

Love,

Alicia


Jessica,

I'll get a picture of Gavin in his chair sometime just for you! Thanks for a peek into your life as well! Give a Alex a squeeze from me!

Love,

Alicia


Tam,

It is quite amazing the bond that can be formed from so far away and never having met, thanks to our special children! I'm thankful for your support and friendship as well! Hugs for you and Abby!

Love,

Alicia

Cindy said...

I love hearing your praises and the praises of all of your boys! I hope they are all enjoying school. My oldest is in 7th grade this year too...We're not getting old-they're just growing up!

Cindy (TJ's mom)

Cari said...

Alicia,

I have xopenex too, and it's FABULOUS. I can almost guarantee you that Gavin feels awesome after taking both the albuterol and the xopenex. They are very easy and light drugs that don't make you feel really horrid, they clear you up very quickly.

Cari