Please pray for Josiah UPDATE POST #32

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MommyMish's picture
Joined: 05/30/07
Posts: 1889
Please pray for Josiah UPDATE POST #32

He may have pyloric stenosis, a condition which causes the stomach muscle to thicken and close off access to the intestines. My oldest had this condition too, and it's a simple surgery to fix.

One doctor thinks he has it (though not completely closed like Caleb's was). Another thought the thickness was in the range of normal (even though it was thicker then the given range of normal). So now a GI is being consulted to find out if we should have another, more accurate test done (barium x-raying).

Sigh. This is so much more difficult to deal with when other children are involved too. If he has it, we have to go to Mayo for the surgery and that's 3ish hours away.

But I just want Josiah to get better and to be able to eat without pain and spitting up most of the food.

We'll find out tomorrow if he needs more tests.

Joined: 09/01/04
Posts: 1436

I'm glad it is a simple fix but I'm sorry he has to go through it. Keeping good thoughts!

jd6405's picture
Joined: 09/17/06
Posts: 1278

Oh goodness!! Poor thing and poor you!! I hope it all turns out ok! KUP!

coolmama72's picture
Joined: 10/20/01
Posts: 8185

Definitely will keep him (and you) in my prayers.

Natalie had to have the barium x-ray done when she was a few weeks old. I was surprised at how easy it was. I hope that you get answers fast! Poor little guy!

sewgirly's picture
Joined: 01/01/06
Posts: 1496

I'm praying for your little guy. I hope that he doesn't need surgery but if that is what will help him, I'll be praying that all will go well and fix his troubles. I'll say a prayer for you guys tomorrow that you get some answers.

Joined: 06/04/07
Posts: 1368

Lots of prayers being sent your way. Where do you live? I'm 5 hrs from the Mayo, northwest central MN.

mommys's picture
Joined: 05/08/06
Posts: 6264

I'll definately say a prayer. So sorry.

MommyMish's picture
Joined: 05/30/07
Posts: 1889

"Beertje" wrote:

Lots of prayers being sent your way. Where do you live? I'm 5 hrs from the Mayo, northwest central MN.

MN/IA border. My kids go to school in Fairmont.

Princess Leia's picture
Joined: 10/29/07
Posts: 1075

Prayers said! Been keeping up all day on FB. Hugs, hon!

MommyMish's picture
Joined: 05/30/07
Posts: 1889

Okay, I'm glad I won't get to talk to my doctor until morning. The lab report says his stomach was distended and says that it's because he wasn't fasting and that's why the results were difficult to see. Um sorry, no one asked me. He hadn't eaten since 5:00am, which means he had fasted 4 hours, which is in the accepted range for infant fast.

And how can he think 4mm is NOT at least the start of pyloric stenosis? Every medical journal my mom pulled up tonight (she's a nurse) and talking to my cousin (a surgeon who has done these surgeries) says that 4mm is the low end, but is it. If he's saying that it's because there wasn't a clear picture... well, as you can see, I'm a bit angry right now. I'll be able to calm down and rationally talk about it to my doctor in the morning... but come on. My son has a distended stomach when he's fasting. That's NOT normal. I've been through this before. It's not as bad as Caleb had it, but that does not mean that his pain isn't just as real.

Okay, now to go hug my little man some more and see if I can get him comfortable enough to sleep.

K9Trainer's picture
Joined: 09/25/06
Posts: 4065

Oh gosh girl!!! I am so sorry. I know it's hard when they are in pain... You are his advocate though and I know you will do right by him. Prayers going up right now!

StateChick's picture
Joined: 03/22/07
Posts: 3629

Praying for yall, Mish - KUP, okay?

:bigarmhug:

Joined: 03/16/15
Posts: 53852

Oh wow! Isn't it irritating when you end up having to stand up for yourself so much with doctors?
Stick with it and hopefully things will be better soon. I am definitely thinking of you!

Mommy2007's picture
Joined: 12/13/06
Posts: 1203

keeping you in our thoughts and prayers. So sorry you have to go through this yet again

MommyMish's picture
Joined: 05/30/07
Posts: 1889

My doctor called me back at 9am on the nose. He's talking a completely different story now that he's talked to the GI doctor and agrees with everyone else that he very likely has pyloric stenosis but it's mild right now (meaning food is still getting to the intenstines, but slowly). My doctor feels out of his league and he wants the GI specialist to administer the barium x-ray, and the GI doc agrees that he'd be better to do it so they could get answers right away. But the GI doc isn't in until Friday.

We could go to Mayo, but then it would be for the test, have to return, have to consult our doctor, etc and then back if it is. So unless Josiah goes critical before Friday (in which case we'd end up in Mayo and stay there until surgery), we wait until Friday for further confirmation and to find out what course of action to take.

Oh, and I did mention about him not eating for the ultrasound and the doctor told me that in that case then he's almost positive it's a mild case. Sigh. I'm glad we're doing the tests to be sure, and I'm glad that Josiah hasn't been in as much pain with me going off caffeine... but every step moves us closer to surgery for another of my children.

slurpeegirl13's picture
Joined: 02/26/07
Posts: 4125

Oh, Mish, I'm so sorry you have to go thru this! I hope your Dr sees what you see and they can 'fix' it for him soon - poor little guy having to be in pain! :bigarmhug: Keep us posted!

MommyCB's picture
Joined: 05/04/06
Posts: 7623

I read this last night and said a prayer for Josiah. Didn't have time to reply until now, but obviously in this situation you DO know more than your doctor....you've been down this road before! I'd continue to push it until you get the surgery done. So sorry Michelle. Sad

PS I stalk you on January 2010 and looooved that sweet pic of his smile. He's a doll!

MommyMish's picture
Joined: 05/30/07
Posts: 1889

Now the test is tomorrow at 10:30am because our hospital doesn't do those tests on Friday. The results will be faxed to the GI doctor and then our doctor will call us as soon as he gets the results... min 4 hour wait.

If this test agrees with everything else, then it's on to schedule surgery. But the GI specialist at my mom's hospital thinks surgery should be pushed even if it's borderline as Caleb has had it so the likelyhood of it improving on its own in so much less because of the family history.

So I'm mentally preparing myself for surgery.

And tonight I can't feed Josiah for as long as possible before the test. Sad

mommys's picture
Joined: 05/08/06
Posts: 6264

Big hugs!!!! :bigarmhug:

I'm so sorry you have to go through this. I'm glad it is borderline at this point so that he is still getting some nutrition, etc, but so sorry it is even an issue.

I'm glad the doctor admitted that this may be over his head. Sometimes that can be hard for them to admit.

scrapangel's picture
Joined: 10/05/07
Posts: 807

Knowing that your baby has to have surgery is never a fun thing to deal with. But the good news is that it sounds like the issue is one of those one time fixes and then it is back to normal. Keep us posted but know I am keeping you guys in my prayers and sending you a long distance Hug.

captainswife's picture
Joined: 11/25/07
Posts: 2687

oh hun that's so tough to deal with. Your poor little guy :bigarmhug: I'm sorry your famliy is dealing with this again...I hope everything goes smoothly from here on in. Will definitely be keeping you guys in my prayers :bigarmhug:

MommyMish's picture
Joined: 05/30/07
Posts: 1889

We wait and see. Test today said normal but my doctor was pissed at his nurse. He wanted Friday because it was the good radiologist. My doctor NEVER gets pissed. It was weird to see.

So now we're on to Mayo to see a pediatric GI doctor because we have 1 abnormal test, 1 normal test, symptoms of it and family history of it. Nothing we can do until then but if it's not pyloric stenosis then we can see if it's reflux and it should be able to be diagnosed that day. Another week of very limited sleep for both hubby and I, and pain after eating for Josiah. Sigh.

It's really starting to hurt our family all this lack of sleep and stress. We'll recover, but it's not a happy time at all here. We're hitting breaking point.

AshnBill's picture
Joined: 11/06/06
Posts: 5333

Oh no, I am so sorry to hear that Michelle. :bighug: I hope you get some definitive answers soon. Poor Josiah to have to go through that. Hang in there 1 more week (hopefully that's all!).

Joined: 04/08/08
Posts: 807

I am so sorry! My prayers go out to Josiah and your family!

Cherrykitten's picture
Joined: 07/03/08
Posts: 700

:bigarmhug:

I've been off for a few days so I wanted to say I'm so sorry you guys are going through this. I can only imagine how hard it is for everyone in the house. Hopefully Friday will come quickly and you will be able to have a diagnosis either way.

KUP

LindieLu's picture
Joined: 08/11/05
Posts: 1384

I'll be thinking of you and your family. Please keep us updated on the news. I hope Josiah gets some relief. Poor baby. Give him a big hug for us!

coolmama72's picture
Joined: 10/20/01
Posts: 8185

I'm just catching up here now. Sure sounds like a rough time for all of you! Both of my girls had reflux, and while that's painful, I'm hoping that's all it is for Josiah. Because that's a lot easier to treat than dealing with surgery. Still keeping you in my prayers.

:bigarmhug:

sadieruth's picture
Joined: 06/09/05
Posts: 6187

Poor little guy! I'll be praying! Please KUP. I hope he's not hurting too much!

MommyMish's picture
Joined: 05/30/07
Posts: 1889

He's not crying as much with the spit up, but yesterday was a day full of projectile vomiting. Half of his spit ups were projectile. That's hard to deal with. He's still grunting and straining for hours after feedings too so sleep from 3am on is usually light at best. But we're doing pretty good. Hubby and I caught up some on sleep yesterday and we think we've figured out a new sleep schedule for us to help us both get the most amount of sleep possible, while still caring for Josiah.

Thanks for the prayers everyone. Keep them up until Thursday at least.

auret's picture
Joined: 08/23/06
Posts: 1558

I haven't had a chance to post, but I've been reading your FB and been praying for little baby J and your family!

Joined: 03/16/15
Posts: 53852

I just now read this whole post, and I want you to know I am thinking about you and praying for you. I hope eveything is going to get better for you all soon and you can get some much needed rest. You are in my thoughts and prayers.

On a side note, I used to live in Roseville, MN but I was in Mankato often. And a good friend of mine had family in Fairmont.

MommyMish's picture
Joined: 05/30/07
Posts: 1889

Had the ultrasound yesterday. It was interesting. He's officially diagnosed as normal, with a caveat. It was a higher level ultrasound and the first reading came back that he in fact had pyloric stenosis because his pylorus was thickened. However, when the radiologist took another look via ultrasound, they were able to manipulate him so that his pylorus relaxed. He's got a spasmy pylorus.

On the bright side, he's normal for now and NO SURGERY. On the down side, when he spasms, milk collects in his stomach which ferments, which causes the gas. Also, if his pylorus decides to not come out of the spasm, then he'll officially, I don't know the exact term, but lets just say he'll come down with pyloric stenosis.

The GI doctor said she's never seen a case like this but has heard of them. If at any time we suspect that he's gone into full blown Pyloric Stenosis, we can call her and get in instantly for a repeat ultrasound. She felt confident telling us we can do this as we've experienced it before in DS1. We'll only call if the projectile vomiting comes back with every meal, and he starts to show signs of dehydration despite eating.

Now, on the reflux/allergy front. Tried soy today after being off it since Thursday and he's been spitting up curdled milk while in pain and projectile vomiting. Now the vomiting could be the spasmy pylorus, but the rest really points that the soy is the big trigger.

So the plan is absolutely no soy (for his sake), absolutely no gluten (for my sake), off dairy (which I already was, but for both our sake). He is showing vast improvements on Zantac, but she did not like his pain scream, even if it was only brief, and likely tied to the soy. If in two weeks, after he gets a good level of Zantac in his system, he is still giving the pain cry, we will up the dosage. If that doesn't work, we'll go to a stronger medicine. If in a month, he's still spitting more then a happy spitter should, we'll also attribute that to no longer being related to the food allergies and look at the medicine dosage.

It feels good to have a plan in place. And honestly.... I'm actually kind of geeked about changing our family diet around. I know that this is drastic, and it does kind of worry me about going out because we practically have to bring our own food to everywhere, but it HAS to be God working in my life to accept this. I went through the drive-through at Arby's today, armed with what I could and couldn't eat (could being only the roast beef, plain, no bun or sauce), and had no problems sticking to it. The other foods (some of which used to be my favorite...including having a BUN LOL) did not appeal to me at all. It's like a switch has been turned in my head. There is some crisis in still trying to figure out new recipes and making favorites, just healthier, allergen-free versions. Yet, there is a peace about this. It helps to have a baby that is now smiling for the first times in his life and sleeping 4-6 hours at a time at night now.

Thanks for all the well thoughts and prayers. I'm sure I'm going to have down days about Josiah being on medicine and hating having to make everything from scratch and being so natural, but for now.... I'm happy.

coolmama72's picture
Joined: 10/20/01
Posts: 8185

Wow, what an update! I'm glad there's a plan, I'm glad he's normal (even with the caveats). The dietary changes would totally throw me for a loop, you're handling it a LOT better than I would. I'm so glad that he's smiling and doing so much better!!!!

Both my girls were on Zantac, but it didn't really work for Natalie so we switched her to Prevacid after about 2 months (and she ended up needing to stay on reflux meds until she was 15 months old). Anyhow, I know the whole dance to find the right dosage, hope that dance is short lived for you.

tialee's picture
Joined: 10/29/07
Posts: 2779

Glad he is smiling Smile Wow what a lot to deal with though congrats mommy for dealing so well.

Breen31806's picture
Joined: 09/05/06
Posts: 1172

Glad you have a plan and you have a smiling sleeping baby Smile

sadieruth's picture
Joined: 06/09/05
Posts: 6187

YAY for a plan of action, and a smiling baby! That's awesome news! I am sorry to hear that it's not completely fixed though. I will continue praying though. Thanks for the update. Wish I was there to give you a break.

MommyMish's picture
Joined: 05/30/07
Posts: 1889

Sadie- you've been a help with the breastmilk bags. I'm going to have to have to get rid of my stash (over 100oz!) and re-pump as soon as the soy is out of my system.

Thanks everyone for the thoughts and prayers. They've meant a lot to me. I love this board so much@

mommys's picture
Joined: 05/08/06
Posts: 6264

wow! I love that there is a solid plan in place. That is so reassuring. I'll pray some that everything evens out and he feels better.

auret's picture
Joined: 08/23/06
Posts: 1558

Mish, sent you a pm!

Good luck with the reflux meds! DD was much like Gwen's Natalie. Zantac really didn't work so we ended up on Prevacid until close to 14/15 months. Insurance required that we try the Zantac at least 30 days though. It was not fun to wait that out. Caleigh also had lots of trouble with dairy, but at least that's an adjustment that you've already gotten used to.

I'm so glad you've been able to consult with good GI doctors. I'm sure it's made a huge difference in understanding what's going on.

Glad you're getting some good sleep now! Yay!

MommyCB's picture
Joined: 05/04/06
Posts: 7623

oh Michelle. I've been thinking of you guys so much. Glad you have "some" answers. I was hoping you could get a definitive solution. I hope the Zantac works for him. YAY for Josiah smiling and giving you longer sleep stretches. I'll continue to pray.

slurpeegirl13's picture
Joined: 02/26/07
Posts: 4125

Wow! What a big thing to go thru for such a young little guy! I'm glad surgery isn't neccessary right now and that it can be controlled with your diet - and I'm glad you found the strength/mindset you need to be able to refuse the things that will put him in pain! You are one awesome mommy for not even thinking twice about it, he is so lucky to have you! :bigarmhug: