endoscopy tuesday!!….

[Anonymous]

Thanks guys. She still has a cold, but not too bad, so hopefully she’ll be all right for the test tomorrow. I’ll give her cold meds tonight, but nothing tomorrow.

[Anonymous]

Good luck – we’ll be thinking of you guys.

[Anonymous]

Is he kidding me!!!!! (DH, I mean!)…

Listen to this, I need to vent or I’m going to blow. Hailey’s scope is today at 2 pm. We need to be there at noon, and it takes at least 1.5 hours to get there. We’ve been talking about this for months. Anyhow, he comes in to Hailey’s room where I’m lying with her after having been up most of the night, and tells me that we need to get up because he needs to shower for work! I was like “what do you mean, we have Hailey’s scope today, you took the day off”. And he says “no, I didn’t. you never told me that I needed to take the day off”. So I went nuts and told him that I’ve told him this a million times, and that he had it booked off when it was scheduled in July before they rebooked us. He said that he didn’t know. I honestly was about to murder him! Now he’s trying to make arrangements to take the day off. What is his issue? The form they gave us also states that they want two parents if possible, as someone needs to be there for the 4 hours, and someone to supervise the child on the way home. I don’t really think that’s necessary, but given how long we’ve waited, I at least thought that he would be there. I swear I could lose it right now!!!!

[Anonymous]

MEN! What’s wrong with them?

I hope it all works out. I’d hate to have to go myself, but if you have to you’ll be able to manage it. Let us know how it goes. You and Hailey will be in my thoughts and prayers today.

[Anonymous]

Oh Lori – I’m so sorry – I know how angry/frustrated you must be. I wish I

lived in Toronto – I’d go with you. Marisa sends hugs and kisses (as do I of

course). Will be thinking of you and waiting for an update.

[Anonymous]

My husband is pretty much the same… but i honestly cannot blame him. He is super busy at work and his schedule gets filled up quickly. SO we now have a calendar on the fridge – i write down every appointment for Matthew and will put in there whether he is coming with me – for example, St Marys says Thais But i am not going to Baltimore alone, so it says DAVE and Thais… we also use it for his trips… he usually has 2 or 3 overnight trips a week and it helps me to know when he si out, so he just writes it down, so i know how to organize myself!!

GOOD LUCK!!!

[Anonymous]

Oh Lori – I can only imagine how frustrating it must be.
Sometimes men just don’t get it!!! If I were close, I’d go with
you. Zach and I are thinking of you and Hailey and hoping for the
best. Big hugs to you all – Let us know how it goes!

[Anonymous]

I hope it all worked out and they are doing the endoscopy! Isaac had a cold and a fever and they still did it. They gave him a tylenol suppository to start off the endo. I will be praying for Hailey and You!

[Anonymous]

Thanks all! We’re back, and DH did come with. After MANY MANY ugly words being exchanged this morning, he finally realized that it was his mistake… He booked off the original date of July 11th, but when it got changed to Sept 12 and I called him to take that day off instead, he thought it was too far in advance. Then he just for some reason (stupidity, insanity?… I don’t know) assumed that it would be fine for me to go myself. So he didn’t forget about the appointment, he just assumed that I was doing it alone like I usually do. So each time I said “Don’t forget that we have Hailey’s scope on Tuesday”, or “We need to be there for noon”, he kept thinking me and Hailey, not him. Oh, the craziness…

That aside, things went fairly smoothly. Hailey went to bed with a fairly bad cold, and by some strange miracle, woke up with a totally dry nose and a clear chest. After the procedure when I got her in the recovery room, she was dripping snot again. Bizzarre.

Anyhow, we got there at noon, and unfortunately they were delayed, so Hailey didn’t get taken to the OR until almost 3pm. By that time, she was kind of cranky and starting to realize that something was up, but they had the best playroom and she loved being pulled around on a wagon by dh. Unfortunately, even though I tried, they wouldn’t let me into the room even for the anaesthesia, so they basically took her away from me in the playroom, and then carried her down a very long hallway to the OR. I have no idea what happened after she went through those doors. They told me that they would give her gas first so that she wouldn’t feel the IV going in. Thankfully, we were super lucky and she had a phenominal nurse with her in the OR and also in recovery, so I was very happy about that. She was kind of delirious in the recovery and also all the way home- crying, writhing around, and she puked up quite a bit of bile and mucous, but that seemed to help a bit. Our nurse was very understanding, and when I told her about the feeding aversion, she told me that we could take her home after an hour of vitals, and forget the rule that they have to drink there. But that if she couldn’t drink at home, then we’d have to come back or go to our local ER. I was very appreciative, since in the past, the nurses there have looked at me like I’m from mars when I’ve told them that my child won’t drink even though she hasn’t had anything for more than 12 hours.

The GI said that everything looked normal on the surface, as I pretty much expected. No obvious signs of inflammation of the stomach or the esophagus, or small intestine, so the 30mg of prevacid has been working. They took the biopsies, and I should hear something in a few weeks, though I don’t expect to hear any news (hopefully). He said that since she never had a probe done, we don’t really know how bad her reflux was at the worst of it. But based on the symptoms- the sandifer’s, the irritability, feeding aversion, sleep problems- we can assume that at one point it was very bad. How bad it is now is hard to tell, because it is possible that it’s still quite bad, but that the acid is controlled. Or that it’s not that bad, and some of the stuff we’re seeing now are behaviours that started for one reason, but persisted for another. He also said that in babies who have had at one point acid damage to the GI tract, they tend to have delayed motility that causes the reflux to persist for longer even though the LES has matured.

So the bottom line is that he feels that this might just be Hailey… that there is reflux still going on, but that we won’t know how bad it is (which he suspects that it isn’t at this point), and that we might just have to accept that this is part of her life. She may never outgrow the reflux, but hopefully it will be easier to manage as time goes on. And he says we can keep her on the prevacid for now, and said that if she has to be on it even for the next 10 years or more, that should be safe. He’s going to talk to us about a plan after we get the results back, but I have a feeling that he’s going to discharge us, since he doesn’t feel it’s a severe case by the standards that he usually sees (i.e she’s thriving without worse complications, thank God).

So that’s it. We’re not much further ahead, but I’m still glad we did it, so at least we don’t have so many lingering questions. We’re not going to do a probe- he doesn’t like to do them on kids with feeding aversions unless there are serious complications because they can cause big problems for a feeding point of view, as the memory of the pain can trigger the aversion again.

We’re happy that nothing came up, even though we don’t have any more answers. At least we can hope that maybe there’s still a chance that she’ll outgrow it. But if not, one thing that a trip to the OR of the children’s hospital does is make you count your blessings that you’re only there for reflux. There are worse things in life. This may be our challenge, and unfortunately, something that Hailey may have to live with as she grows, but at least that’s all it is, and hopefully we can keep her comfortable so that she doesn’t have to suffer. So all in all, things are fine. Thanks for all your well wishes and support.

Christine (kevieb)… I wanted to thank you for your initial push for us to get it done. I think that your frankness about it way back when helped me to get a grip about what we needed to do.

HUGS to you all.

[Anonymous]

I’m glad that your DH was able to come and that the procedure went well

and that nothing came up. Hopefully Hailey just keeps improving as the days

go by. Big hugs to you both (and to Sarah and your DH too).

[Anonymous]

I’m so glad to hear that they treated Hailey so well, and happy they didn’t find anything. I hope her feeding aversion improves soon. If only she’d been on a high enough dose of Prevacid way back when this all began.

Maybe she’ll start eating with all the toddlers in her daycare class. Wouldn’t that be amazing?

I’ll continue to pray for Hailey. Keep us posted on her progress at daycare.

[Anonymous]

Glad you were able to get it done and now it is behind you…and really glad there was no bad news!

Just wanted you to know that at 12 months (what is supposed to be the “magic” age for outgrowing it, and was the age for Andrew), we took James off the Prilosec because he seemed so good (happy, sleeping well) and it took about 2 weeks to realize he still needed it – he still had the reflux, but it was being controlled by the meds. I was totally bummed, figuring he’d be one of those who’d never outgrow it, but the doc pointed out that his case was pretty severe (based on the dose he needed – we never did the testing on him) so we should just keep going until 18 to 24 months – she felt that lots of kids who don’t outgrow it at 12 months do between 18 and 24. And he did!

[Anonymous]

Seems like it was worth it – there is nothing worse than not knowing. At least you know there is no damage and i would be more inclined to push her a bit more on the feeding… that is just me. (If she is not vomitting, that is).

Glad that she did OK!! Matthew loved the wagon too… we were there when they put the mask on him and it takes about 5 seconds of complaining and then they are asleep!!

[Anonymous]

So glad you had a good experience at the hospital and that they treated
Hailey so well. That makes everything much easier. And I’m
glad your dh decided to go – Moms have to go through so much all the
time! Glad everything came out okay and now there are no
lingering questions. Hopefully her eating will continue to get better
every day. Hugs to you all!

[Anonymous]

Very disturbing that they wouldn’t let you take her back for the anesthesia, but wonderful that she had a nuturing nurse! I know how helpless it feels to leave your baby for the procedure, I walked into the wall on my way out of the room when ryann got scoped. My feet just wouldn’t move right. I had to have the nurses help me because I got a huge goose egg!

Interesting about the motility issues. That is what we are dealing with now, I couldn’t get her doc. to talk to me about it. So maybe there is still hope that things will get better this year for the babies! Glad you all made it through it, I know you waited along time for the apt!

[Author]

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