Been a while since my last post, but it has been busy. I have actually had better night nursing so haven't found the time to be on the computer. The night nurse called in last night, so here I am.
We are in the process of cleaning out this house so Marcus can do the floors and some other things.
Camden has had a bit of a rough week, but keeps on smiling. =)
He has been retching and spitting up after some of his day feeds. Back to that again, so not sure if his Nissen is unraveling or what.
Saturday his balloon in his Mic key ( feeding tube ) deflated and fell out without us seeing it. The nurse tried to get it in and completely closed. I dread dealing with that, so I was glad she was here to try. I can handle his other issues, but that thing gives me the willies. We took him to the ER and they couldn't get it back in either, (sigh) so they have a temporary one in until I can get in to the surgeon today. Today we are also supposed to move over to the condo and have the oxygen tanks transferred over there too. I am thinking I need a few extra hours added to the day.
He did go to see the surgeon last week and everything looked good. She didn't want us back for another three months, but we are going to have to squeeze in a visit today. I can't wait to get his normal feeding tube back in.
I also noticed a funny smell around his trach. ( yuck ) They cultured him at his last pulm app. and found that he had some "staff aureus". He isn't sick from it so they are leaving it up to him to fight it off and he has been fine and symptom free.
We also went to the GI and she increased his feeds.
He now gets 120 mls three times daily, but we are supposed to be working up to 130. I am nervous to continue to increase with his gagging returning. He continues to get 510 mls continuous feeds during the night and still tolerates that well.
We are still weaning him off the vent twice a day, and he is doing great. Doesn't seem to phase him. I praise God for that....
He is sleeping peacefully right now...... my sweet baby......
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sorry things have been hectic for you Dev. Praying for you to have a refreshed spirit. <3
ReplyDeleteSorry your night nurse didn't show. You really need the rest. I pray one shows today so that you can get some much needed rest. Thanks for keeping us posted. Camden, we love you. You are such a fighter. From the first day you came here you have been showing us what God can do!!!!
ReplyDeleteWow, sounds like you have much more on your plate than you should! That is scary about the g-tube. Marissa has a bard which is designed to not come out on its own. It has to be changed in clinic. We have been thinking of changing to a mini balloon button, which has the low profile of the bard and the locking mechanism of the Mic-Key. It comes out and is replaced like the Mic-Key and I am like you, it gives me the willies thinking about having to put it back in. Is Camden going to have the regular button replaced like the original one with the surgery or will it be easier than that?
ReplyDeleteI'm praying for you guys.
Hey sweetie. We had that happen with Robbie's balloon on his tube during a continuous feed. It went all night and had closed, so we had to go to the ER. I don't know what the surgeon is going to do but with Robbie they did a metal rod called a dilator. They shoved that in the hole swearing to me that it wouldn't hurt. Yeah right. One of the only times he cried back then. Im glad your going to the surgeon to have it done instead of in the ER. I think the surgeon will do it better! That is one of those memories of the feeding tube that I don't like.
ReplyDeleteI hope and pray that the nissen isn't coming apart. I know Robbie's was so tight he couldn't burp. I know it can happen but I think its really rare.
Continuing to pray for you and Marcus the kids and Camden!! He is so precious!! God sure knew the right Mommy for the job.
Love ya girl!
Thnkin of you and listening to your message for John every time I need a pick-me-up or laugh!
ReplyDeleteLove you girl!!
nursing!! you mean he is nursing!!! THATS WONDEFUL! i know how excited you must be!!
ReplyDeletelove you
joy