Thursday, July 5, 2012

Clay's 4th of July fun..

Clay started the Fourth of July off with his own fireworks show...and it sure gave me and Eric a good scare! I've talked about the sweaty, frantic fits that Clay throws...the ones that usually mean he's in trouble...well, he had one of those episodes about 6:30 yesterday morning. We suctioned, changed his trach, bumped up his oxygen, tried everything we knew to calm him...but he was highly unhappy to say the least. After a good hour of trying to calm him and doing all that we knew to do, we decided to take him to UK for an x-ray to see if something may be going on.

We turned off his feeds and loaded all of our equipment up and by the time we got him in the car and ready to go, he was smiling again. So that got us thinking maybe it was something to do with his feedings. He's on 22 hours/day of continuous feeds into his jejunum, while his gastric port is draining secretions off of his stomach. We've noticed the drainage off his stomach had more of a brownish-bloody color, which isn't the usual color...And a couple days ago, the drainage looked really milky, so we were thinking maybe his jejunal tube was in a bad spot...which would be something our pediatric surgeon would need to deal with. So we decided to make the trip to Lexington anyways. Whatever was causing Clay's uncomfortableness sure sent him over the edge--and like I said, I've seen those fits before and they usually mean something is not right. They are ZERO fun!

But by the time we got to the emergency room, Clay was really turned on--happy to be in his old stomping grounds, maybe? Of course his girlfriends came to see him down in the ER, so he was really happy to see all of their faces ;) I know the ER doctors thought we were crazy for bringing this happy, wiggly baby to them. But we still wanted an x-ray, even just for our peace of mind--which looked fine, thank God.

Clay got checked out by one of the pediatric surgeons, who reassured us the drainage color wasn't concerning. The brownish-bloody stuff was probably because of the balloon that sits on the inside of his stomach, holding the g-tube in place. Doc said it can rub the lining of his stomach, especially now that he's getting so active, and cause irritation and discomfort. He also reminded us that sometimes kids don't want to eat - which is something I hadn't really thought of. Even though Clay has alllllllllll this medical 'stuff' & special needs, I suppose he can get a regular ol' tummy ache just like any other kiddo. Maybe his tummy was hurting and he didn't feel like having 76mL/hour of milk pumped through it, so he got upset about it & threw a fit, which caused him to get air hungry, which caused him to turn blue & red & purple (remember that firework show, I was talking about?) & he needed more oxygen, which caused me and Eric a good scare. We just have to remember that when Clay gets upset like that, he's going to require more oxygen to get over it & he probably will turn colors and it will probably take a while to recover...his little lungs just can't cope the way most can.

They ended up drawing labs & putting an IV in to give him a bolus of fluids, since he was NPO for about 5 hours. We started his feeds back at 50mL/hour and observed him for a couple hours to make sure he tolerated it okay, and the doc advised us to leave him at 50mL for 24 hours, then slowly work our way back up to 76mL. Then we were out the door and home free!

So I guess you could say our first ER trip was a bit of a fluke...but regardless, I'm glad we made the trip to have him checked out. Although me and Eric have been right by his side the past 8 months & know Clay well, it's going to take some time for us to build up our confidence and know what is an emergency and what is not. I am just so so so thankful it was a false alarm and we were back home the same day.

Aside from the episode yesterday, things have been going great here at home! Thankfully, the transition home has been smooth for Clay. He's such a happy content and curious. Here's a few pics of us enjoying home life:
Meeting Uncle B and family for the first time :)
Chillin' with Aunt Kd
Getting a massage from Aunt Pammy..hehe, love his face!
Chillin' with Uncle Eli
Meeting Aunt Amy & girls for the first time :)
Loungin' with Nana Lisa
Going for a stroll with Daddy :)
Watch out! Momma's got the wheel ;)

So happy to be together at home :)


  1. Get used to it. I swear my kids do that to me every time we go to the ER. I'm fretting and by the time we get there and he/she is seen by the doctor, I know the doc is thinking we are over zealous nuts. They always act like that happiest kids on the block who couldn't have a thing wrong with them! Well, I guess that's really a good thing in the end. Would rather have false alarms and look the fool than have a true emergency!

    I'm glad he's doing so well and you are all getting along well at home!

    Jacob's Mommy
    RCDH Survivor

  2. I'm so glad to hear your lil' man is doing so well!!!! May God continue to bless you and your family!!

    Trish W. Allen