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Discussion Starter · #1 ·
Dd's surgery to reimplant her ureter will be late next week. I am trying hard to be rational and logistical -- planning for the older children to go to my mom's house, figuring out what to pack. I feel like I should be more relaxed about this whole thing, but I am really stressing. I organized all dd's paperwork and realized that, in six years, she has been hospitalized more than 30 times and this will be her 10th surgery. So, so very not fair.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">s no it isn't fair, not one bit. It just sucks so badly to see your child like that, in all that pain. We've only done one, but I can't imagin that I'd ever get used to it no matter how many times we did it. I loathe it all and you have every right to dread it too. Sometimes having a sick kid just seems ridiculously unfair, both to you and the kid. It hurts to see them suffer. I'll be thinking of you guys, when will the surgery be? Please come back here and unload when you need to. Iknow it's been cathartic to post about our hospitializations. I guess it makes me feel less isolated. So please come back and updat and vent or anything else you need. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">s and you are one strong mama to have done this ten times, I'm falling apart with one. You rock.
 

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A big, big <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> to you and your sweet dd. There's nothing worse than watching your child be tortured and they look to you to make it stop and you can't because their life depends on this torture. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">
 

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I feel for you! <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2"><br><br>
I don't know how my mom did it, between my eight oral surgeries in six years that followed a two year break from the years of being in and out of the hospital with my brother. I just don't know how she did it.<br><br>
I hope that all goes well for you and your family as you go through this round. You are a strong momma and I look up to you and the other moms like you who have the strength to go through all the trials you go through with your kids.<br><br><img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">
 

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I'm with you Snugglymama<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">. I think it is impossible to relax when you know you are going into the hospital with your child (especially when they have been through so much). Em had 7 surgeries in her first 7 months. I look back now, and I don't know how I survived it....but Mama Bear kicks in, and you will do anything to get them through it. I know now though....even going in for check ups sends me into a panic that they will find something else, have to admit her, end up in surgert, etc. etc. The mind is a bizarre thing. Hang in there! I hope that she does fabulous! Let us know how it goes<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">.
 

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<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2"> It isn't fair.<br><br>
Be sure to take things to take care of you too.<br><br>
It's great that you have a place for your older ones to stay.
 

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Discussion Starter · #8 ·
We had our preop visit today, and it was a train wreck. IF they even do the surgery, they want to book dd a bed in the ICU <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/bawling.gif" style="border:0px solid;" title="bawl">. Boy, was I not expecting that!! The anesthesiologist was very concerned about her lungs and her liver, both of which I had thought were doing ok. We need to get both pulmonology and GI to sign off on the surgery before we can go ahead. Surgery is scheduled for Friday.<br><br>
Please send prayers, good wishes or whatever you can that we can go forward and that surgery goes well!
 

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<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/gloomy.gif" style="border:0px solid;" title="Gloomy">: Oh Beth I'm sorry for both of you. It isn't fair and I'm so sorry there is even more to worry about. I would be scared as well and I'm sending you tons of positive thoughts and prayers.
 

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I'm so sorry that more got added to your plate. We're keeping you and your daughter in our thoughts and hoping all goes well. Please keep us updated if you get a chance.
 

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I am not a special needs momma, but this caught my eye (hope I am not intruding). We are just home from our second round of bilateral ureter re-implant. DD#2 had hers done last tuesday. She recovered much physically much faster than DD#1 (who had hers done 2 years ago), but it was MUCH harder emotionally. I am can not imagine what you mommas who do this several times go thru. You have so much strength. I will be thinking of you both!
 

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Oh no. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> I'll keep you and your dd in my prayers. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2"> Please keep us posted when you can.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/grouphug.gif" style="border:0px solid;" title="grouphug">
 

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Discussion Starter · #14 ·
Jessmcg, could you tell me a little bit about your dd's surgeries? I've just been doing some research (which I probably should've done earlier, but this whole thing has been sort of chaotic), and it sounds like the recovery from this surgery is really painful. I'm worried about that and about pain management.
 

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I just wanted to send you some very big <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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<div>Originally Posted by <strong>snuggly mama</strong> <a href="/community/forum/post/7283922"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Jessmcg, could you tell me a little bit about your dd's surgeries? I've just been doing some research (which I probably should've done earlier, but this whole thing has been sort of chaotic), and it sounds like the recovery from this surgery is really painful. I'm worried about that and about pain management.</div>
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No problem. (I also had it done, but was only 3.5 and only remember a few things, and I was in the hospital for 21 days).<br>
I have heard that bilteral (both sides) is more painful than only 1 side so you have that to deal with. MY girls and I also have EXTREMELY high pain tolerance and abnormally fast absorption of pain meds - just to put this in context.<br>
DD#1 had her surgery done at 5.5 years old. (I was 5 weeks pp, so dh did most of it). She took a very long time to come out of anthestisia (sp?). She was on the max dose morphine for 36 hours and then weaned to tyelnol with codine. They also give Ditropan (which relaxes the bladder). Because the bladder is cut, it has massive extremely painfull spasms while healing. Imagain the worst pain of a UTI X 10. Make sure she is kept up with meds. DD slept thru second night and by the morning was screaming in pain and it took over an hour before they could get it back under control. She went home on the fourth day, still on Tylenol with codine and ditropan. She took these occasionally as needed for about 2 weeks. It took 2 days before she was ready to get out of bed and walk, and she was totally freaked out. DH had to pick her up (she kept her body rigid flat) and put her on the floor and we had to force her to walk. It took several days before she would stand up on her own.<br><br>
DD#3 is 3.5 and she woke up very quickly after the surgery, and did not sleep again for 30 hours. She was afraid they were going to take her away again <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">. She was only on morphine for 24 hours, then weaned to tylenol w/ codine (along with the Ditropan). She was moving and wanting up with 24 hours. Her catheter kept getting blood clots in it, which would cause her bladder to fill with urine and strach the internal stiches which was extremely painfull - broke thru morphine. This caused her catheter to have to be irigated several times. She got up and walk about early the day after the surgery, and wondered the halls and playroom most of the day. By the end of the second day she wanted to go home and I spent all of the second night holding her in a bear hug while she tried to take the IV and Cath out (she did get the cath 1/2 out one time) and screamed that she wanted to go home. The took the cath out at 48 hours post op and we went home at about 6:30 that night.<br><br>
The surgery itself takes about 4.5 hours. We travel over 2 hours to go to the Children's Hospital and visit an awesome pediatric urologist who does 100s of these surgeries every year. She likes to leave the catheter in for 48 hours to let the bladder heal, but as soon as they are mobile and pain is under control after that, they can go home. Be prepared they will pee bright red (dh calls it Kool-Aid pee) for about a week.<br><br>
I spent many hours thinking of all you specail needs mommas that spend so much more than 3 days in the hospital and the strength you have. I meant to come and write a post but had not, so if you read this, I am so impressed by all of you!<br><br>
I hope everything goes well for you. If you have any more questions about the procedure, I am more than happy to try and answer them, this is one subject I am very knowledgable about.
 

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Oh Beth. I'm sorry.<br><br>
And I know the ICU is scary, but at least people will be paying attention to her needs. Sometimes in your own room they don't take things as seriously.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
And <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br>
I'm so sorry you're going through all this. Please know I'm keeping your family in my prayers.
 

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Beth ~ Thinking about you and sending your daughter healing energy! Do you mind me asking why the doctors are concerned about her liver and lungs? Is this something related to transplant?<br><br>
~ Meghan
 

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Discussion Starter · #20 ·
Her lungs have sounded "crackly" for a long time, which I attributed to her reactive airway. But her ped, and now the anesthesiologist, are concerned that these lung sounds are indicative of more serious damage/issues. She also has a chronic liver condition (congenital hepatic fibrosis), so we've always been aware of the signs of infection in her bile ducts, but she's never had a problem. Apparently, one of her liver labs (don't know which one) came back abnormal. We haven't tested liver function in a really, really long time, so it's scary to hear something come back like that. Could be a side effect of her drugs, though, so I'm trying to just do the wait and see thing. I guess the whole day was just one of those not-so-pleasant reminders that dd has lots of complex, serious medical issues.<br><br>
So, in the next 48 hours, dd needs to see both the pulmonologist and the liver specialist to try and get them to sign off. If we can't see them, or they won't sign off, we'll have to reschedule the surgery. The surgery sounds rotten and miserable and even though intellectually I think it's necessary, I hate the thought of dd being in so much pain.
 
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