Hospital last night

[Anonymous]

We’ve found a new GI for Ian who truly is wonderful-caring, listens, and I honestly believe knows her stuff. She sent us to the hospital last night (5pm) when she heard 2 enemas weren’t working for Ian. Partly we did this because we’re to go away this weekend and visit grandparents. She wanted us to get an X-ray to see exactly what was going on as Ian (if left to his own devices) is only able to get down 1/2 oz -1 oz now per feeding (we’ve managed to get at least 2-3 but it takes a long time and a lot of enticing). Ian’s also started to have crying fits around feeding times which he hasn’t done in ages. She said then we’ll know if we have to keep him here and start doing some emergency testing if it’s not a constipation issue (just a reminder-Ian’s been having small, watery stools, not hard). We were pleased someone was finally acknowledging this wasn’t normal.

Now for my rant-I went to the hospital at 5pm-paperwork and bureaucracy until 7pm (to be expected yes, but I was under the idea that we were just getting an xray, not admitted and I hadn’t brought anything with me-we ran through all the elecare I had for the day-not that he’d eat much, but his appetite is still there so he at least needs to be offered). Saw ER doctor by 8 and had to repeat our entire history/story (and they had a student ask us the questions for training purpose which I know and I agree has to be done, but ARGHHH!!) Then, finally to their credit when they heard we had no formula, we got an xray-yeah! They came back -4 doctors- to tell us they see something in his colon-up high, nothing low-there are no obstructions, distentions, or twisting out of shape parts so that’s a good sign. Then this resident says to me ‘we can’t guarantee you it’s stool up there because xrays don’t do that, etc, etc.” So I naturally said, ‘well what else could it be?’ And she said, ‘it’s his colon, so it has to be stool, right?’ EXCUSE ME! She then said, It’s of course probably stool-99% chance but xrays can’t show us exactly what it is.’ My dh had the good sense to pull me away before I started screaming and explained to me that they have to be legal about these things but of course it’s stool. The main Doctor doing all the training said it’s stool lodged up there and not a main blockage, but this resident I assume trying to show off all of her knowledge of xrays scared the crap out of me. Because of that, I think I’ll forever wonder what the heck else it could be. GEEZ!

So by 10pm they say they called our new GI who wants us to do an enema there and MoM at home. Now, I’m out of my mind. Ian’s screaming for food, tired, cold. We’re tired, hungry, and now we have to do exactly what we’ve tried at home that doesn’t work. I asked My GI earlier in the day about Miralax and she said no way because they have no studies on Infants under one year and although many babies have been fine there is a huge risk for infants getting side effects because their stomach linings aren’t developed. (So please any of you that have been fortunate to use it and have success – don’t worry- your child seems to be ok to handle it). Because Ian’s been so behind digestively, I had to agree with her that it’s not the right course. So they do the enema (same fleet one has home) and OF COURSE, nothing. Just water-LIKE I SAID WOULD HAPPEN. Gosh-now I’m thinking this thing up there has to be really lodged and hard-I mean it’s been almost 4 weeks for crying out loud. So they then try to let us go saying -‘Oh that’s not good that the enema didn’t work here, but go home try the MoM and call your doctor in the am.’ I’m embarasssed to say I went a little to town on them and finally gave up saying I just wanted to get my son out of there and that it was a complete waste of our time.’ The Main Dr. came over to us and said I really feel your frustrations and please call your GI and beg for something else. She even told us to say she said to call and ask about a better laxative.

So, we’re home now. Still don’t know if we can leave this weekend and Ian still hasn’t pooped. And to top it all off – he stopped eating this morning at 2oz even after he didn’t have dinner last night.

HELP!! Any ideas of what to do. I’m now so terrified of the Miralax I don’t even know I would use it at this point. Ian’s just always been that 1 in 100 or 1000 chance…

Exhausted. But many thanks for listening to this very long rant.

Tracy (Ian’s Mom 9-26-05)

[Anonymous]

Oh good grief! They need to give you the Miralax to give him! Most medicines have no studies in infants or toddlers but yet there are medications that they still need. Hopefully, they have another idea to get him cleaned out because that is quite obviously what he needs. He’d already be pooping if you’d given him Miralax, it works rather quickly. Our Ped GI says he sees it “all of the time”. I think the outcome of him not getting that blockage out of there is far more risky than giving him Miralax for a few days.

[Anonymous]

Thank you Stacey! I quite agree!

So frustrating!

Tracy

[Anonymous]

I agree too – never heard any problems with the Miralax and I think
it’s more dangerous to have him backed up. You know how sensitive
Marisa’s system is also and we used the Miralax. On third and last day
some bloating and gas pains but it was temporary and did help get out
the poop.

I’m so sorry this is going on, Tracy. Have you put in an emergency call to Moon? I have some Miralax here if you want to try it.

[Anonymous]

Yes-still fighting with dr.s via phone right now. They’re calling me back. First they said as long as he get’s more than 10oz! EXCUSE ME! And then they said let’s have him come into ER and give him some fluids! EXCUSE ME? They are not listening to me! I can keep him hydrated with various methods but how do we get the log out!?? They keep insisting Enemas get it out and they wont use Miralax.

I’m here screaming and hollering to them. They think I’m insane, but I can’t believe this has been 4 different doctors now!

[Anonymous]

Just spoke with GI again. She thought it’s the reflux because enema didn’t work so I went through why I don’t think that is the case. I told I think the poop is hard and lodged. She said she’s going to take a look at the xray and talk to radiation. If they say it’s hard then we have to do a complete work up for Hirschsprung’s -barium enema and biopsy. We also have to get 15oz a day in him this weekend no matter what or back to hospital and keep using MoM. We then may need to do surgery.

I told her can’t we just try a laxative as I’ve heard that many people have this problem and they’re not all something as serious as Hirschsprung’s and she said no that this is too extreme an issue.

What do you guys think? I’m devastated over here.

[Anonymous]

Why would it be the reflux? They saw something lodged in his colon and you know he hasn’t had a good BM in days.

I do think it’s good that they do a complete workup but I think they
should clean him out with Miralax first so they can get s clear view of
what’s going on. If you want to pop by (or send DH) I’d be happy to
give your some Miralax to try. I do think they should do the testing
since the enema isn’t getting out anything at all, but don’t see the
point of at least making him more comfortable first. The reason the
Miralax should work if it’s hard is because it draws water into the GI
tract and helps soften the stool so it can pass…

[Anonymous]

Oh that is just so horrible! I bet you felt so helpless when they didn’t get a bm with the enema. MoM works on mild cases not really bad ones. I hope that you can get this gi to understand and listen! I hope Ian is feeling better soon!

[Anonymous]

I was starting to lose confidence in this new GI until I just received a call from her. She went to the hospital herself to look at Ian’s xrays. She said while although there is some poop-it’s very little-too little to say even if it’s hard or soft. She then told me not to worry but the xray showed Ian has an enlarged liver. She said the hospital told her that last night. She also said don’t panic because her exam and the hospital’s exam of his stomach showed no signs of it being too big and it could have just been the xray. However, we’ve been told at ultrasounds before that Ian has an “incredible” liver-not sure what that means. So we have to have a specialized ultrasound and possible biopsy to rule out that being the problem. Also, we’re having a rectal biopsy to check for ganglion(sp?) cells to rule out hirschsprungs. If he has a low count, we’ll be moving on to the barium enema. So she said Miralax is not a factor due to very little being up there.

I had my little panic attack and now am calm for my son. We’re starting everything next week and my job is to just keep him hydrated. She was actually pretty great with me. Explained she has a son as well and these are the tests she would want done to rule out any major issues. She also said she doesn’t think the liver’s going to turn out to be anything.

Here we go. At least we’ll have some answers.

Tracy

[Anonymous]

Tracy, what an awful ordeal. How is he feeling today overall? I will be thining of you and praying for your little one. Please keep us posted.

[Anonymous]

Hope you get some answers soon and that Ian is feeling better. Hugs……

[Anonymous]

Oh Tracy what an ordeal. I hope you can get some answers next week. Keep us posted.

[Anonymous]

Tracy – I’m so glad that Dr. Moon called you back and that she is
looking into everything. HOpefully you know more next week and it turns
out to be nothing. Hope Ian eats some this weekend and you can all get
some rest. Definitely keep me posted and let me know if there’s
anything I can do.

[Anonymous]

Have you been able to keep Ian hydrated? Are the tests happening Monday or Tuesday?

[hellbennt]

WOW. So much to deal with!!! Sending you good thoughts/wishes, etc…hug!!!

~laura

[Author]

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