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  #1  
May 14th, 2009, 05:46 PM
Tara0906's Avatar Mega Super Mommy
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My son has kidney reflux. He was diagnosed with it when he was a newborn. It goes from a stage 1-5. Justin was a 4-5 on both sides of his kidney's. I was told the chances of him outgrowing was very slim. He would most likely need surgery to fix the problem at school age.
It has improved somewhat over 6 years but not enough to advoid surgery.

I was told last July that he would need surgery and it was no rush to call the office when I was ready to do it. Then my grandmother got very ill and I wasn't able to do it. My mom was caring for her and it was just too much going on. My mom would be the one watching my 2 other kids while im at the hospital with Justin. Anyways.
Last day of school is May 29th and then the next Monday I will be calling to make a date for the surgery. I am so sick over it.
I stay up at night dreading this surgery, I think of all the things that could go wrong, I think of all the pain and crying I know he is going to do.

I know its best to do it, get it over with and that he won't be on a daily antibioctic like he has been since 2 months old.

I am just so scared for him. I am so scared of something going wrong and losing my precious child. I am scarerd something could go wrong and he could end up with another brain injury and how wonderful is doing, how hard he has worked to get where he is and he could lose it all. He could end up with a worse quality of life. Right now his quality of life is just like any other "normal" 6 year old (except some "quirks").

Most of all how do I explain this to him? Do I tell him now? Wait till the night before or when we actually get to the hospital. I know how he will react and he will be scared and hysterical.

I am having a HORRIBLE time dealing with this. I feel silly venting about one surgery to you girls when I am sure some of you have gone through multible surgeries with your babies.

Anyways.. I will kup on what happens.
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  #2  
May 14th, 2009, 07:14 PM
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I know it is hard to deal with, but I strongly suggest not waiting to tell him. It will be easier for him in the long run to let him know it is coming. Some things that can help are reading LOTS of books about it. Let him know exactly what to expect and let him know you will be right by his side.

I know it is natural to focus on what "could" happen, but keep your head up and think positively. Do the best you can to make it as safe as possible, and let the universe do the rest
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  #3  
May 14th, 2009, 07:18 PM
stacyp's Avatar Mommy to Andrew & Luke
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First of all ((HUGS)) And no matter what, when it's your child, it's a big deal. It was so hard to hand Luke over to the surgical team the day he had his heart surgery. As they walked through the doors with him, I must have looked as I was going to collapse because the nurse came behind me with a chair & said I needed to sit for a moment. But, he was only 3.5 months old when he had this done & it did make it easier for the fact he did not realize what was about to happen.
I would be as simple with the explanation as possible. And, I would not do it very far in advance. Does the hospital this will be done at allow you to go back with him until he receives anesthetic? That's something new at the hospital we take Luke to. I think it may be beneficial especially for older children. It may be something to ask about.

Millions of hugs. It's hard. Let us know when he goes.

First of all ((HUGS)) And no matter what, when it's your child, it's a big deal. It was so hard to hand Luke over to the surgical team the day he had his heart surgery. As they walked through the doors with him, I must have looked as I was going to collapse because the nurse came behind me with a chair & said I needed to sit for a moment. But, he was only 3.5 months old when he had this done & it did make it easier for the fact he did not realize what was about to happen.
I would be as simple with the explanation as possible. And, I would not do it very far in advance. Does the hospital this will be done at allow you to go back with him until he receives anesthetic? That's something new at the hospital we take Luke to. I think it may be beneficial especially for older children. It may be something to ask about.

Millions of hugs. It's hard. Let us know when he goes.
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  #4  
May 14th, 2009, 07:20 PM
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I just wanted you to know that I have been in your shoes, just 2 weeks ago actually. If you need anything let me know
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  #5  
May 15th, 2009, 05:07 AM
Ditzzy's Avatar Stupid Lamb;)
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((Hugs)) I know it's hard, believe me. I had to hand Ava over to her Drs last week and will again very soon for airway reconstruction (a huge surgery). I'm terrified, but I know it's the best thing for her. As this is the best thing for your son. That doesn't ease our fear, but we will get through this! You are an amazing Mom!!!!

I have a friend whos DD just had her kidney reflux surgery and she was out of the hospital the next day. I think they only kept her overnight because she has a tracheotomy and wanted to observe her. She was back to herself in 2 days.

I know nothing I say is going to make it easier. I'm thinking of you and will pray. Please KUP!!
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  #6  
May 15th, 2009, 06:23 AM
Tara0906's Avatar Mega Super Mommy
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Really?

My son's urologist told us to expect a 3-5 day hospital stay. He told me they have to keep a stent in his kidneys's, control the pain, expect lots of cramps in the belly.. blah blah blah.
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  #7  
May 15th, 2009, 07:00 AM
Ditzzy's Avatar Stupid Lamb;)
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Quote:
Originally Posted by Tara0906 View Post
Really?

My son's urologist told us to expect a 3-5 day hospital stay. He told me they have to keep a stent in his kidneys's, control the pain, expect lots of cramps in the belly.. blah blah blah.

Yep, one day. She has a g-tube, so as long as she was off IV pain meds and keeping her O2 up, she was allowed to go home. All fluids and meds went into gtube. She was sore, but able to play.

I think all doctors do things differently. Plus, I don't know what stage she was. She is 2 yrs old, so she's a bit younger also.

ETA: The person who's DD had the reflux surgery has a blog, and it you want the link I'll share it. It might make you feel better. Pm me if you want it.
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Last edited by Ditzzy; May 15th, 2009 at 07:30 AM. Reason: more stuff
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  #8  
May 15th, 2009, 08:48 PM
kittycat's Avatar Platinum Supermommy
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Kyle has grade 2 Hydronephrosis and kidney stones (stones because of lasix). He was only on the antibiotic for two years, as he never had an infection. They also weened him off Aldactazide (the alternate diuretic that also helped with the kidney stones). We've been doing pretty good so far, but he isn't potty trained (5yo), and show no readiness for it (doesn't know when he's going). We're going to try training again, because his brother is now interested. If nothing comes of it - we'll see the dr again, but it could be tied to his CP issues, not just the kidney reflux.

I know the procedure is very common and successful - though we haven't had it yet. I'm sure the first 24 hrs will be uncomfortable - but it will pass. Kyle's had MANY surgeries and procedures for other things, and I also tell him exactly what is going on. And I try very hard not to act scared or concerned/worried in front of him. I think that helps.
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  #9  
May 18th, 2009, 11:31 AM
iamkc's Avatar Platinum Supermommy
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I'm so sorry that I'm late in reading this. How scary! I agree, though, that you should tell him now. In most cases, it makes it easier when he actually goes for surgery. I'm trying to think of someone to call with tips on how to make him less worried about it. Kannon has only had his tonsils/adenoids out, but we were able to lead up to the surgery, so he was just fine when he went back. (NO, I'm not comparing the 2 surgeries, just giving you an idea of how I think that telling him helped him.) Milo has had other major surgeries, and I was shocked at how quickly he recovered! Nothing like kidney surgery, but he had a g-tube and fundo, 2 different surgeries at different times. They warned that he would take a while to recover. He slept all that evening (surgery in the afternoon), then by the next morning, he was all over the place, playing, rolling, giggling, etc. I think that docs sometimes give larger estimates so that a kid has time to recover without a parent worrying about how long it's taking, but kids are remarkably resilient!!!

(((HUGS))) I hope that the hospital where he's having surgery allows some of those last-minute parental comforts. Mostly, though, I send hugs and good thoughts. If I have to have surgery, it's not a big deal to me. My kids having surgery? Ugh.

More hugs. KUP on surgery date, Justin's ideas on the surgery, etc.
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  #10  
May 18th, 2009, 01:49 PM
Daisyfields's Avatar Platinum Super Mega Mommy
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I can relate when it comes to having a child that is "somewhat" normal but requires surgery... my DS, who is now 8, at 6, had to have a Sleep Apnea surgery, he had to stay in ICU for 48 hrs. & then came home to 2 weeks out of school.

When it came to telling him, I waited until about a week before. I didn't tell him when I found out that it had to be done. To me, I know my DS, I knew he'd get worried & to make him more upset wouldn't be productive. We went to his pre-op & it was a month in advance, I told the nurse that he didn't know, she took me out in the hall way & torn me a new one saying that I was "lying" to my child & that as a result he would no longer "trust" me... Do NOT tell me how to raise my son, I know what's best not you! & I demanded another nurse...which took us more time. DS didn't realize why he was there, they asked me more ?'s than anything. They did take his vitals & at the end, blood work, he wasn't happy but it was over fairly fast.

I explained to my DS that they would give him a sleepy mask & he'd wake up w/ a sore throat & that he could have a lot of ice cream & liquids & that he'd miss school. A few days prior, I made a point to bring him to the grocery store, we picked out a whole bunch of ice cream, Italian Ice, Popcicles, juices, what ever he wanted. He loved that

The day of... we went in, the doc explained that he'd be getting a sleepy mask, I couldn't go in w/ him, I was 9 mos. preggers & when you're preggers, you can't be around general anesthesia so my "ex" took him in. That same day, Cooper, had surgery too.. (yes, 2 children, same day, had surgery, literally on different floors, I was running up & down the elevators, I had major contractions from lack of sleep & fluids). The nurses thought I'd deliver Teighan that day .

Any ways... Cooper... was fine, I made my DH stay w/ him, again, I couldn't be in the room, I was preggers. Then, when Dominic got out of surgery & they had him in ICU, he was screaming so hard for me that they allowed me to be w/ him. The nurses helped me & proped me against him w/ pillows, as big as I was. I held him for a while. Cooper was in for day surgery so we ended up leaving him, Dominic, at the hospital & going back the following day. I felt bad, but I couldn't stay, I had to care for Cooper, they wouldn't let me b/c of my pregnancy & I knew the nurses would care for him. He was on a lot of Morphene so he didn't remember much.

Dominic came home, did well the first day. I thought things would be okay. Well...by day 2-5... he refused drinks or food, wouldn't open his mouth, said his face hurt him. I had to rush him to the ER at Children's & they determined that the device they used to keep his mouth open, overextended the child's jaw & dislocated it, now he has TMJ. nice... The part that I couldn't be angry about was this was part of his "potential side effects"... his face hurt, but not b/c of the surgery, b/c of jaw pain. They gave me more pain Rx to give him at home & his recovery was slow.

It was hard, I am not going to lie. But now, he's fine. He had another sleep study & all went well. This was a child that had over 90 episodes in 60 minutes, stopped sleeping entirely, that's scary. I knew I had to do something for him. Did it stink to do it? Yeah... I feel bad but today, he's fine now, he sleeps better & life is back to normal.

I hear you though. You hate to do something that is going to bring him pain. As far as what to tell him. That's up to you. Is he a overlysensitive child? Would finding out too much in advance make him more nervous or not? You know those answers. Work w/ the child on his demeanor, and go w/ that. I bought some books on visits to the hospital. And again, we did a lot of special stuff for him to feel comfy.

Not sure if my story helped you at all but I can relate & I know that it can be scary. "TRY" not to get overly worried, (easier said than done)...but the more you panic, the more he will. If you want to freak, do it behind closed doors.

If you want to talk, PM me...

HUGS
Chantelle
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  #11  
May 19th, 2009, 06:30 AM
Tara0906's Avatar Mega Super Mommy
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I decided I will tell him the day before... so I can prepare him. I won't tell him sooner because he is overly sensitive and will totally freak out and worry. I don't want to do that to him.

My other son Nathen had tubes and his adnoids taken out.. and it was a fairly easy procedure and QUICK. They let me go back with him until he was under sedation... I HOPE I can do that with Justin.

I am just trying not to think about it and all the bad stuff that could go wrong. Thats my biggest problem. I have horrible anxiety and I always think the worse.

Anyways... Thank you all for your input.
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  #12  
May 19th, 2009, 08:00 AM
Dacontay4's Avatar Mega Super Mommy
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Personaly I wouldn't wait to tell them but you know your son best, and you know what he can and cannot handle. Big to you. It's always a big deal! I was more scared then words can say when i had to hand over my baby to have her colectomy. I will keep you and justin in my t&p's, I'm sorry you have to go through this, it's a big deal no matter what!
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  #13  
May 19th, 2009, 02:54 PM
iamkc's Avatar Platinum Supermommy
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I meant to tell you...because I'm not sure if Justin has had surgery before, the anesthesia team was GREAT in giving us little hints. Our Children's does not let parents go back with kids when they're being put under. (We thought they did, so I'm glad that we asked!) They gave us a mask to bring home to let Kannon get used to, then practice with, etc. By the time they took him, he was pretty ok with it, I think. And really, when they wake up in pain, no matter how much you explain, it's still going to hurt. We felt like that one little thing,though (the very scary mask), helped SO much! Just a thought. I've been thinking about you guys! And, of course, I'll continue to think about you all the way through!!! (((HUGS)))
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  #14  
May 19th, 2009, 03:25 PM
Daisyfields's Avatar Platinum Super Mega Mommy
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Quote:
Originally Posted by Tara0906 View Post
I decided I will tell him the day before... so I can prepare him. I won't tell him sooner because he is overly sensitive and will totally freak out and worry. I don't want to do that to him.

My other son Nathen had tubes and his adnoids taken out.. and it was a fairly easy procedure and QUICK. They let me go back with him until he was under sedation... I HOPE I can do that with Justin.

I am just trying not to think about it and all the bad stuff that could go wrong. Thats my biggest problem. I have horrible anxiety and I always think the worse.

Anyways... Thank you all for your input.
I hear you w/ anxiety. Sometimes as parents, even though we don't mean too... we project our anxiety onto our kids, even though they would not normally be anxious about an issue, b/c we act like we are, or they can sense that we are, they become more anxious. Then again, there are some kids that are super sensitive. I made the decision to keep things "hush" w/ Dominic b/c he can get so worried that he gets panic attacks & vomits. I knew it wasn't just me. But I am super anxious by nature, thank God for anti-anxiety meds that's all I got to say. Hope you can relax a little. Try to think about how he'll be feeling better & not the bad stuff. As a mom, we can't help ourselves at times but maybe try not to think of it at all until the day before just like when you tell him? That way you sort of put in on hold in your mind?
Just a thought.
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