Surgery date pushed back *UPDATE*

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ClairesMommy's picture
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Surgery date pushed back *UPDATE*

Claire's surgery was yesterday and went very well. No problems at all except she flat out refused to put the hospital pajamas on. DH and I almost had to hold her down to get her changed. Those are the times when you realize how strong your kids really are!

Just before she was discharged her urologist came in to talk to us and he said everything went great. I asked if he could see any deterioration or small holes that had opened up in the implants she had done in the first surgery last year, and he said that those implants had completely disintegrated.:eek: Her body attacked them, broke them down and absorbed them. Hence the reason why she continued getting UTIs after the first surgery - literally within 4 months they started up again. I asked if these new implants could do the same thing and he said that yes, since it happened once she's at a higher risk of having the new implants disintegrate too. Crap. Double crap. We're hoping the new ones will hold for their 'life expectancy' which is about 10 years, but if they too dissolve then I don't know what the next step is. Like, how many sting procedures can she have without having permanent kidney damage when the implants disintegrate? She might have to eventually have an open surgery where they cut her ureters and reimplant them deeper into the bladder. IDK. Hopefully it won't get that far and that these new implants will hold!

Claire was scheduled for a repeat bilateral sting this coming Friday, but it's been pushed to Nov 2. No big deal except that I would have preferred her to have the operation on Friday to give her the weekend to recoup. She had like zero issues after the last one (except for the anaesthesia) and I'm not expecting her to have problems after this one. I guess the one good thing is that she will be totally fine for Halloween instead of maybe being a big sore.

About Ben, his allergy testing was completely normal. The whole panel was negative. So, his allergist thinks that his non-allergic rhinitis and asthma and every other thing he's dealt with is all due to the GERD. He had an upper GI a couple weeks ago and sure enough it showed the reflux. The acid has been coming up into his mouth and nose for a long time and that's probably why his adenoids were so bad and his nose never stopped running. It also explains the ENT actually seeing stomach acid in his throat when he scoped Ben to see the adenoids, and also why Ben had so many bad ear infections and throat infections. It also explains the asthma and chronic chest infections. I never would have connected acid reflux and asthma, but once the connection was made I just kept finding study after study.

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Madi had silent reflux too! I knew they sounded so much alike!! After a year or so on Prevacid and Nexium her reflux went away. Has Ben been taking any reflux meds? Madi still has issues with her lungs but no official diagnosis of asthma (just RAD). She takes a very low dose of QVar and does really well. Hopefully they'll find the right combo of meds for Ben and he'll outgrow his issues too!

I hope you guys have a great Halloween! Madi has had croup the last 2 years so we're hoping for a happy healthy Halloween too! We'll have to start a thread of our cuties in their costumes!!

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Glad she'll be able to enjoy Halloween without pain. Frustrating on the allergy testing. Eli's testing came up negative too. However, we did a reflux test and he definitely does NOT have that so the allergist is pretty sure he DOES have allergies, but the test just didn't confirm it. Glad you got answers.

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Tanya, Ben's been on reflux meds since he was just itty bitty. It was Zantac for ages, starting at just a couple months old. He used to puke up soooooo much of his feedings. It got a bit better once he was on solids, but it came back and got continually worse and worse. He was put on Prilosec about a month ago and it has made a huge difference. He still gets the occasional hiccupy, burpy thing, but we just have to watch what he eats. It's a relief to know he doesn't have any food allergies. He'll see the pedi again in early December. I know he's being referred to a gastro specialist as well. If his pyloric sphincter is simply too weak to keep the food down there are options.

Re Claire, you know how sometimes things happen for a reason? Her surgery was pushed back and I was kind of bummed that it wasn't today and she wouldn't have the weekend at home to recover. But as it turned out it was for the best. She is enduring her first battle with croup right now. I had to take her to the ER on Tuesday night because of a very high fever and terrible cough. Once they heard her cough they were like "Yep, that's croup" and gave her an oral steroid. She was good for the next couple days and slowly got her voice back but this morning she spiked another fever and I kept her home. If her surgery hadn't been postponed they likely would not have done the surgery today because they wouldn't have been able to get a breathing tube down her throat. Hopefully she'll be fully recovered by Wednesday. Croup SUCKS, man.

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Madison took Prevacid and did well on it for quite some time. Then she started having more reflux symptoms and was switched to Nexium because it is stronger. She did okay for a bit and then the reflux was worse again. The doctor made the call to take her off reflux meds altogether and amazingly the reflux disappeared. I learned that reflux meds are meant to be short-term treatment and if taken when they are not needed they can actually cause reflux. Just something to think about. Sometimes it is worth stopping a med for a trial period to see how the child does without it. Alana has a few more days of Nasonex and then we're going to try her without it and pray the ear infections don't return!

And poor Claire with the croup! Madison used to get it practically every other week and it is beyond scary! Fortunately she never got a fever with it. If you have a nebulizer you can run saline solution through it every 2-4 hours for her. That works even better than steaming up the bathroom. A humidifier at night should help too. Hope she gets better soon!

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Too bad about the croup. Fortunately it doesn't usually last more than a few days. I hope she's all better by Halloween.

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You won't believe this.....but Madison came down with croup today too, lol. Fortunately she doesn't get a fever with it and she isn't too "sick." Must be that time of year.....

Is Claire feeling better today?

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:bump:

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Glad the surgery went well!

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Glad the surgery went well, but I didn't know they could do that. That puts you on pins and needles more. How soon will you know if they do and will they be able to check without being invasive?

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I hope that these ones hold! I'm glad she did well other than the PJs Smile

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"wishing4agirl" wrote:

Glad the surgery went well, but I didn't know they could do that. That puts you on pins and needles more. How soon will you know if they do and will they be able to check without being invasive?

The implants are a gel mostly made up of sugar, so they're designed to slowly be broken down and absorbed by the body, but not quite this fast! They're supposed to last about 10 years and the hope is that in that time the child will have grown tissue around the implant that will act as the missing valve once the implant dissolves. If she has more UTIs down the road then the urologist will probably have to take a look with the scope, so no incisions. If they're gone, then we'll have to decide together what the next step is. If the implants won't hold then the next option is probably going to involve incisions in her abdomen.

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Awwwwwwwwww poor Claire. Prayers this one holds for a length of time that tissue can form and that she doesn't have to have something more invasive done.

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I’m glad the surgery went smoothly.

I’m sorry that Claire is at an increased risk of it not being successful. I will cross my fingers for her that it works well.