There is no belly relief for the little man tonight. Thank you Peanuts mom for sending us those bags so fast so we could try them. Unfortunetly they aren't working. There's just to much tubing for him to push air through. After feeding him with it, I pulled out 50 cc's of air out of his belly. I guess the good thing is it doesn't really make him fussy, he just gets a really distended belly. Today he had a checkup and some monthly labs, our ped called his GI doc and she didn't have any brilliant ideas except to leave his extension open in a diaper when he's not eating. Well we already do that. So for now, we have our own little rigged feeding setup.
See the syringe hanging on his pole? His feeding set is dripping into that, so his belly can vent while he's eating. It works only when we are home.
I also think he's caught this cold Tanner and Carter have. Luckily I think its just your run-of-the-mill cold, so I don't think it will land us in the big house. He's very junky, and his oxygen needs are up. He also is definitely breathing harder, so we'll just watch him. He also had a new vaccine today that I've never heard of. I think its called pneumovax and its for preventing pneumonia. So this kids been vaccinated for everything, because we do know that RSV, or pneumonia can definitely kill him.
I also think he's caught this cold Tanner and Carter have. Luckily I think its just your run-of-the-mill cold, so I don't think it will land us in the big house. He's very junky, and his oxygen needs are up. He also is definitely breathing harder, so we'll just watch him. He also had a new vaccine today that I've never heard of. I think its called pneumovax and its for preventing pneumonia. So this kids been vaccinated for everything, because we do know that RSV, or pneumonia can definitely kill him.
Poor sweet boy. I hope you figure out his belly issues soon!
ReplyDeleteoh I'm so sorry to hear he's not getting relief from the air in his belly :( hope the cold passes quickly!
ReplyDeletemaybe a GJ would help?
ReplyDeleteI hope our trip out yesterday didn't make him sick, hope it goes away quickly. Loved hangin out, I miss it.
ReplyDeleteThe shoes Arna is wearing are special made for braces, got them from Shriners when we got her Dafos. Suenel actualy had a size bigger to trade us, she had outgrown the first pair. I love them, so cute, and FREE!!! love Shriners.
I absolutely LOVE that 2nd picture of Jax!!! Adorable!!
ReplyDeleteI hope that you find a solution to the belly air! And, I hope that his cold doesn't get any worse! Gavin has been sick with one for almost 3 weeks and I'm wondering if it will ever end!
Love and Hugs!!!
We had to check in on our boy today - sweet thing. Wish I knew a trick to help - we just do the open tube to the diaper thing :(
ReplyDeleteSorry to hear about his tummy, you are genius for coming up with a solution that works at home. Hopefully the drs can help you figure out something that works when you go out.
ReplyDeleteHope it is just a cold and he gets over it soon (as well as the other boys).
The GJ helped Tomas tremendously. The tube needs to be placed in radiology, and it is continuos feeds since the jejuenum can't expand like the stomach, but it has made a huge difference in his fussiness. When he is sick and his stomach shuts down I can still feed him, no reflux and no aspiration. Also, even now when he is sick and I need to vent constantly I use a baby bottle at the end of the g-port instead of a diaper. I remove just the nipple from the cap and medical tape the port around the opening. Not sure it would work any better than a diaper but at least it is another option.
ReplyDeleteOne more thing. When Tomas was still on G-feeds, I did pretty much the same thing you are doing now with the 60 cc syringe. I put the kangaroo tube into the medicine port and put the syringe into the feeding port because I did not like all the air that went into the tube when I just dripped the feed into the syringe. I don't know if you're having that problem, but just passing along some info. When we were home I would tape the whole get-up to his crib or pole and when we were out I would tape it to the car seat or stroller. I use medical tape for everything! I also put some mesh over the top of the syringe with a rubberband when we were out to keep bugs and other floaty stuff out of his tubes. I sure hope you find a solution soon. The noise of that trapped air is horrendous and heartbreaking.
ReplyDeleteSorry the bags didn't work. When we use the bags with Junior I just put it on the floor unless he is eating so the air can just run out. Junior now has a GJ tube so I have him feeding through the J but then the G stays vented. When the bag is hanging we did have a hard time getting air out.
ReplyDeleteJunior's mom had a great suggestion! Try laying the farrell bag next to him on the floor. Then maybe he won't have to work against gravity to get the air up and out.
ReplyDeleteWhat you rigged up is great. We sure do get creative when we have to! Have you tried a gj-tube with him, instead of the g-tube? We did that for a while when my Peanut just did not tolerate g-tube feeds.
I wish I could help you (and Jaxson ) with the belly issues. It makes me sad:( You are a trooper Lacey! I will send an extra prayer that sweet Jax can get a bit of relief. I love the pics of that precious face!
ReplyDeletePoor little Jax. I sure hope something works soon and that everyone recovers from their colds. Happy New Year!
ReplyDeleteYour little man is getting so big Lacey! Bless his little heart (and tummy!) Hope he gets relief and that you arent in for a long night. Kiss those sweet cheeks for us!
ReplyDeleteLoved your family pictures from Christmas too - your kids are beautiful!
Look at this link:
ReplyDeletehttp://www.governor.state.ut.us/rplr/rdcc/2001webfolders/Health/travis-c-waiver.pdf
When I get home tonight I'll do more checcking, but the Travis C waiver is very close to what Phoenix is on.