Hospital last night

[Anonymous]

Thank you everyone. I really appreciate your warm words and thoughtful support. Means more than ever at a time like this.

We went to visit MIL this weekend. Figured there was nothing we could do until Tuesday anyways so best to get our mind’s off of it. Ian is still not eating. Couple of sips then backs off, again goes to bottle hungry, sips, backs off, repeat, etc. We’ve been giving MoM as suggested and pedialyte for 24 hours today to flush him out. We’re getting watery bm (about 1-2 teaspoons) but nothing significant. Still waiting for the big poo. His mood is getting fussier as he was about 2 months ago before Elecare and prevacid.

We’re very frustrated. We’re glad finally to have some tests and hopefully get some answers, but I’m still worried that he has something still in his colon. Although the GI said it wasn’t much, I’m reminded of the ER doctor who said ‘it’s not good the enema isn’t getting it out.’ Maybe I’m crazy but my mind is wandering to -Did he eat something funky off the floor at daycare? Does he need a laxative (although the GI will never give me one)? Or is it some strange condition or disease? We’re also worried because I know so many of you have had this issue that maybe we’re not addressing something simple first. If it is just hard poo lodged up there, what could possibly happen if we keep ignoring it and leaving it up there? MoM isn’t working nor pedialye. Is that in itself a danger-could it rupture? Feel like I went from Dr.’s who don’t respond to one who may be over responding. Which I admit is the better of the two. Otherwise he’s doing ok-pretty good mood except for increased fussy moments and developing well. We’re just so confused.

We have blood tests on Tues, and tests follow during the week. I’ll keep everyone posted. And really, thank you so much again for the hugs and kindness.

Tracy
<!–
var SymRealOnLoad;
var SymReal;

Sym()
{
window.open = SymWinOpen;
if(SymReal != null)
SymReal();
}

SymOnLoad()
{
if(SymRealOnLoad != null)
SymRealOnLoad();
window.open = SymRealWinOpen;
SymReal = window.;
window. = Sym;
}

SymRealOnLoad = window.onload;
window.onload = SymOnLoad;

//–>

[Anonymous]

Hi Tracy. Re eating something funky, one of my friend’s twins ate part of a plastic spoon recently. A big scare but he was OK.

On the note of big scares, Marisa fell off our bed last night. Stupid
me left her for a minute watching Sesame while I brushed my teeth and
she rolled right off – horrible thud. Luckily it’s thick carpet/padding
and she seems fine – but it was terrible and I felt like crap…

As for BM, the ONLY thing that worked for us was Miralax. Enemas only
got some out and MoM not much more. She’s still constipated (again
though) and Ped has us start probiotics today.

Let me know what happens tomorrow. What kind of blood tests are they doing?

Hang in there – Marisa and I will be thinking about you guys.

[Anonymous]

Tracy ~ I still really think it sounds like he’s got some stool stuck in there. Geez, 1-2 teaspoons of watery poo – this sound just like a constipation issue the watery stool is probably leaking around the hard stool. Our Ped GI says this just happens because their digestive systems are immature. I really doubt anything other than Miralax or some other laxative will work. You could try some Citrucel on your own. Hailey’s Ped GI prescribed 1 tsp 2 x per day. It has to be added to at least 4-6 oz of liquid.

I hope you get some answers soon. Frankly, I’d demand a laxative before doing any other testing.

[Anonymous]

I agree with Stacy. I don’t understand why Dr. Moon won’t let you use
Miralax and then IF he doesn’t get a big poo and feel better do the
testing after that. Like I said, I have Miralax here – happy to give
you some if you want to try it. My Ped (and the others in her practice)
use it when necessary and didn’t have any hesitations about it.

[Anonymous]

I am so sorry for all you are going through!!! Since I know you can’t research all of this while going through it and running to doc I will see what I can find out and post it here for you. Good luck and you’re in my prayers!!!!!

[Anonymous]

Thanks again everyone-really appreciate everything.

Updates are pretty much the same except for a formula switch. Ian has a liver ultrasound on Friday and a rectal biopsy for right after. They say once they officially rule out Hirschsprung’s they then can give Ian some kind of saline drip in the hospital to get some stool out. However, a couple of Doctor’s in the practice still insist that based on the xray, there isn’t much stool to get. We were told to try Alimentum and actually it’s working pretty good-he’s eating so much more today-up from 1 oz to 6oz a serving! So that’s great but would be lying if I said I wasn’t worried his intolerance will peak through again.

However, he’s still doing this weird bearing down/pushing/grunting thing. After he eats, I put him in his chair for reflux and he starts to grunt, push belly and butt out, and bear down. Puts neck down and actually is pushing. Everyone has said it looks like he’s trying to poo. But if he doesn’t have much in the colon-what does that mean? What could it be? He still has only had small, tiny, watery poops. But he did have croup…Anyone have any ideas?

Again, many, many thank you’s and you’ve all warmed our hearts.

Tracy

[Anonymous]

Tracy – I just don’t understand then what they think they saw up in his
colon if not poop. And even if it’s not much, could it just be in an
odd spot and causing a problem?

So glad he’s eating!

[Anonymous]

Tracy, I’m also glad to hear he’s eating better. Poor little guy!

[Anonymous]

Hi Tracy

I have been without a computer for a long time… now i realise what you are going through! Sounds horrible. I hope they find out what is bothering him soon.

As for Dr Moon, she is the one at Cornell right? She works with that woman, cannot remember her name, but she is EXCELLENT. We are def going to go with them when we go back. The whole team is supposed to be incredible. as for the students, residents etc do not listen much to them… i had so many fights with them when i was at Mt Sinai with Matthew… they would always come and tell me wht they thought… one of them once said — well it seems like reflux is not the cause because he does not throw up and i asked her if she ever heard of silent reflux.. she stared at me and said – what, they do not throw up with silent reflux?? god sometimes they have no idea.

I know it is frustrating but i am sure you will get some answers soon.

Hugs to you and Ian!

[Anonymous]

I agree that you really shouldn’t listen to the students b/c they don’t know as much at all as the dr. That is great that he is eating 6 oz instead of 1!!!!!! What a fantastic turn around. How is he doing today? Hopefully really well!

[Anonymous]

WE HAVE POO! Big, mushy, plentiful poo!! YIPPEE!! I guess the Alimentum change is really helping. He’s eating a ton and has POO! YEAH!!! Please everyone, send us good thoughts that we don’t have the protein intolerance creeping up again. I’m waiting for the other shoe to drop. I wonder if that mean’s finally everything is cleaned out? Wonder if we should do the rectal biopsy on Friday or if Doc was right that it was very little up there and perhaps it was gas? He certainly likes the taste better. Tough call. Thoughts? Maybe it was the two viruses he had back to back? Gosh, I hope nothing else is lodged up there. I’ll have to watch his mood I guess.

Yes, Thais-Dr. Moon is at Cornell and I have to say, she’s truly amazing. Called me at home, trusted my instincts, has great bedside manner, everything. I, of course, get frustrated that it’s always a process figuring out what’s wrong, but can’t blame her for that. We have to rule out problems slowly and there are no short cuts. I’m still ticked at the hospital though!!! When are you coming back?? How’s everything going with Matthew?? I know David’s missing you guys.

Cross your fingers everyone! Maybe this is a sign of good things to come.

[Anonymous]

Yahoo!!! We can both have a poop party! So glad to hear it and I’m sure Ian (and you) must feel very relieved.

Hard to say with the tests on Friday – which way do you lean? What does Dr. Moon say?

[Anonymous]

Tracy

I would just talk to the doctor and see what she says… her boss is something like Sokolowe or something like that… we are def going to go to that group when we are in NY.

As for when we are coming back… who knows. Matthew is doing great with everything other than food obviously… ped is great though so i am not too worried and know this will pass BUT i don´t know if i want to trust someone else with my baby (ie new doctor) just yet. Ped already mentioned the G-tube yesterday, as something we are starting to consider. I know it is the right thing to do because Matthew takes out his tubes too many times, throws up because of it a couple of times a week. So we are waiting and when the ped says it is time, if he does, and i am praying that it does not happen, then we will get it done and stick around for a little bit longer and go back. Once i am as comfortable with teh G-tube as i am with the NG tube then i think i will be OK dealing with him…

On the bright side, Matthew likes everything… yes, everything. Problem is he only takes a few spoonfulls and then he is done! But we are already giving him cookies, yogurt, some regular formula, chicken, veal, carrots, potatoes, apples, bananas, pears, some cheese (both yogurt and cheese are made especially for children with formula) and bread and honey (yes, i know that some research says it is dangerous but for some reason, it is given to children… don´t know if there is a difference between continents just like carrots here do not have nitrates.. but ped said it is OK to give it).. so when we go back, at least i will just have to worry about the quantity he is eating, not the things he likes/does not like!!

So glad Ian is doing well!! We will have a party when we get back!

[Anonymous]

Thais – glad to hear that at least he’s not a picky eater in terms of likes – so that should help at least.

Keep us posted with the G tube. And yes, once you’re back in NYC, the three of us will definitely have to get together!

[Anonymous]

Poop, glorious poop! I’m soooo glad to hear everyone is pooping and doing well.

Thais, glad to hear that Matthew is taking so well to solids! Hopefully he won’t need the g-tube. Please keep us posted.

Thinking of you all…

[Author]

Posts