Well Carters team won.. go D-backs... but Saturday night Jax started sounding junky. This morning he had a fever of 103. I don't know if the fever is from an oncoming cold, or if this is related to why he's been so cranky and not sleeping lately. But I will always think its from taking him out in the cold. Even with him I've never kept him sheltered. I make people wash their hands but I take him places. I know he needs to be a little exposed to stuff so he can build up his immune system, otherwise if I never took him out, the first time I did he would catch something. I know I can't prevent a simple cold, expecially with 3 boys in school, so we'll wait and see if he gets a respitory infection, or if we find whatever's been hurting him lately. Just pray that he doesn't end up in the hospital, either way. We haven't been in for a month and a half, and we'd like this to be a home streak, since October through March has been one hospitalization after another.
Keeping him on his monitors so I can watch his oxygen when he had the fever.
Seriously mom
You are NOT a horrible mommy! YOu are the best mommy I know and Jax is lucky to have you. I think you are smart taking him places and not keeping him completely sheltered. I hope he gets feeling better. He will be in our prayers!
ReplyDeletePoor Jax! I pray that he gets better soon! And, that you don't need to go to the hospital!!!
ReplyDeleteDon't feel too badly, I took Gavin to Caleb's soccer game on Wednesday night and it was freezing from the wind too. I had him bundled up, but I was worried about him the whole time. Sometimes we don't have a choice and we do need to keep on living as much as we can.
Get better Jaxson!!!
Well your certainly not a bad mommy ;) I'd say the little guy had something brewing to begin with. We'll pray he shakes this buggie really quick!
ReplyDeleteLove his baby legs by the way :0)
OH and before I forget...The pooey problem...
Not sure if the doc has explained this to you or not but what happens when they don't go it creates an ileus or larger space that gets stretched out. Aside from their "normal" problems of not being able to go you add that into the mix and well you just have more problems. Until that larger space is completely full or more than full only then will they feel like they need to go hence our boys how can hold poop till doomsday! LOL
What needs to be done obviously is to get that space to shrink back to its normal size which in turn will fill up sooner and they will in theory "get the urge" hehe
Now with Jophie he has virtually no sphincter muscle action so he has trouble even when we get that space smaller however, shrinking that back down is also important so you don't have ruptured bowel....Peritonitus! Eeeek!
This little trick was passed along on one of my special needs lists several years ago. Many of the mommys on there have this same problem with their little ones.
The owner of the list adopted special needs twins when they were newborn. One of them is very involved like Jophie and he too has the "poooey problem" His gastro doc likes to use as little medication as possible because of the kiddos being on so much to begin with. I liked this so much because Jophie is loaded down with drugs as it is already.
Just to give you an idea...We've tried miralax and do keep it on hand if nothing else works. I don't like to use it cause it cramps his belly. Lactulose which is basically jacked up karo Syrup rarely did anything for Jophie aside from cramp his belly. Glycerin suppositories and enemas which do work but again they cramp his belly. All the other things like foods(prunes, juices) and foods/fiber...blah blah
Now granted some of those things DO work but they take a long time AND they cramp his belly....SOooo here's our wacky Pooooey Cocktail Concoction recommended by a real life fancy letters after his name pediatric gastro doc! ;)
Bear with me cause it sounds LOOONEY ;)
Milk and Molasses enemas will do the trick. I use the little hospital medicine cups for measuring. They hold a smidge over an ounce so equal parts for the milk and molasses. Pour both into a cup and zap in microwave for just about 10 seconds or so depending on your micro. Make sure to stir cause the center gets hot quicker than the outer surfaces. Don't want to burn that little tooshy. Once its warm pour into an old enema bottle(I just buy the pediatric ones and dump the belly cramping crud out) and voila! You'll soon be changing a nasty diaper. LOL
They work quickly and no cramping..This also worked to reduce an ileus he had gotten while on the vent. It generally takes 6 months of consistency to reduce the bowel back to its original size once its been stretched beyond its normal shape......
We do one M&M enema about every 3 days if he hasn't went on his own.
Once you get the drain empty and working again..... I've found that all natural pumpkin in a can works wonders and mixes nicely with the formula.Just be careful with the pumpkin puree'. It can actually cause the opposite effect if given too much. Coconut milk works on the same principle :0)
The gastro doc did recommend giving lactulose every day during this Milk and Molasses cleaning out period but I honestly didn't find it necessary. I guess if you were impacted maybe it would be but I'm telling you this stuff works quickly and no belly cramps!
Course I can NEVER EVER eat molasses in anything EVER EVER again! ROFL!
Hugs,
Trina and Jophie
Holy cow! That was long! LOL
ReplyDeleteAlmost forgot...
I was just curious if you incorporate any "real foods" into Jaxsons diet? The reason I'm asking is I do blenderized foods for Jophie ALONG WITH his formula. I know alot of parents who have switched completely over to blenderized but thats not an option with Jophie due to his lungs.
I will say that the difference in him with the blenderized food has been amazing not to mention its helped the bathroom situation a little bit. He's always going to have these problems but any improvement is a step in the right direction.
If your interested I can give you the link to our blenderized group on yahoo. The group is a wealth of knowledge...
Trina and Jophie
OH and no worries if they retain it because its just milk and molasses and they just absorb all the goodies(nutrients/vitamins/calories) ect. via their colon! :0)
ReplyDeleteDid you also know that IF your child is dehydrated you can rehydrate with water enemas? Course the kiddos with tubies its a bit easier but one that can't drink it could be a life saver....
Sorry my brain is just dumping all this crud that floats around in there ;)
Trina and Jophie
Oh of course you are not a bad mommy.
ReplyDeleteHope Jaxson feels better quick, lots of hugs and prayers.
You are a WONDERFUL mommy!! We are praying that Jax's will over come this "cold" and not be hospitalized! I totally know how much extended time in the hospital sucks! We are trying to go all spring and summer (well the rest of spring since we were in for at Easter for RSV) with no hospital visits! We are praying for Jax! He looks soooo cute in those pictures! I could just kiss those cheeks all day! Love it!
ReplyDeleteOne of thD best moms I know,that's for sure.don't be so hard on yourself Lacey.You were just trying to squeeze some normal into the chaos that goes on daily and chances are he was coming down with it something before you headed out.Really and truly.Praying it all passes.
ReplyDeleteOh Lacey! There is no way on this beautiful earth that you could ever be a horrible mommy! Theres not a bad bone in your body! You are kind, caring, loving and just so inspirational to me! Your little Jax choose very carefully we he choose YOU to be his mommy! Megan
ReplyDeleteLet me say that Jax is the luckiest boy in the world to have a mom like you. You do everything for your son and involve him in everything that you can so that he does not miss a beat! You're not afraid to take risks so that Jax can enjoy his life to the fullest! What a wonderful thing! Do not beat yourself up! Keep your chin up and we will continue to keep Jax and your family in our prayers for a speedy recovery minus the hospital. God Bless You!
ReplyDeleteYou could stand butt naked on the polar icecap and not catch a cold. Jax's bug has NOTHING to do with your choice to include him in your family events. Your practice of making him a visible, included part of your family and community will benefit him far more than this latest bugger will set him back.
ReplyDeleteShame on that bug for finding its way into Jaxson's body and Mom's self esteem. :0)
You're a rockstar and you know it.
We live in Ogden, sorry weren't not closer. Your little Jaxson is beautiful. I am so sorry he has had so many health issues but he looks like a fighter!!!! You are not a horrible Mom at all. You need to get out and do things as well and getting him out will help to build up those antibodies as well. We had to hunker down during the winter with Sam and RSV and I about went crazy. We still took him out once and a while and he did get sick once but I think it was good to build up his immunity. Glad you found our blog, hope you don't mind us following yours.
ReplyDeleteI don't think you are a horrible mommy. I think you are a great mommy trying to live a little bit of a normal life. Your other kids need you to be there for them as well. It's easy to feel that way though - I have those days as well. Right now Carter is fighting a yucky virus (could be RSV) and we are trying to keep him out of the hospital too.
ReplyDeleteIf I cross my street I am in West Jordan which makes me think that I must live relatively close to you. My email is kristi6175@yahoo.com - if you want to email me I will send you my address. When you get those cute blankies back from being hemstitched just let me know if you want some extra hands.
Praying that Jaxson stays out of the hospital too - and he gets over the yucky stuff fast!
Kristi
You are not a bad mommy~but I think we all feel that way one time or another. I have actually had family members say that I keep Jonathon in a bubble AND that I never take him anywhere. Well lets see we go to church, the grocery store and health dept and doctors/hospital. To me those are the most germiest places around.....So of course those family members running their mouths and that also have NO clue what we have been thru and go thru are not in our everyday life anymore! I hope Jax is feeling better soon.
ReplyDelete