View Full Version : Uretorocele..anyone elses daughter diagnosed with it?
05-06-2006, 12:54 AM
My daughter was diagnosed this week with a uretorocele. The way we found it is...sunday night we rushed her to the E.R. with a 105.8 temp(we were told by our on call peds nurse she had to have a fever of at least 105 to go to the E.R). Well they did some tests and saw she had a half duplicated system..which just means the two ureters(no third kidney) and a bladder infection because of it(it leaves some urine behind...which leads to the infection). She does not have bladder reflux...but, just the uretorocele. We finally got over the high temps in the hospital with tylenol/motrin and several rounds of antibiotics. She finally got out yesterday. They sent her home with some antibiotic to take by mouth twice a day. They are calling to set up an appt with our nearest children's hospital sometime next week we should have one(which is about four hours away..they have the only pediatric urologists in the state). My question is how did they treat your child's condition? How has your child's health been since diagnosis? My daughter is ten months old...so one doctor told us that surgery maybe required...but, it depends on her age. Basically they kept telling us that we would have to wait to talk to our pediatric urologist. We never got a straight forward answer. We have heard antibiotics and we have heard surgery. Can anyone who has been through this help me? The websites hubby and I have researched are really discouraging. The infections really worry us...this was her first one. But, the high fever and her being limp when we got to the E.R. scared us greatly. Right now we are praying on it and asking that the Lord grant the knowledge to her doctors to correct this condition. As with any parent we worry and want nothing wrong with our daughter. We do praise the Lord that it was found early and hospital tests confirmed no kidney damage!! Right now she is back to her old self and going in every direction in the house :D She is doing just awesome. Any advice?
05-06-2006, 03:03 AM
I wanted to say welcome to C-moms, I am sorry you had to go through this with your dd. I have never heard of this condition but hopefully someone else here may know of it or have experienced it with one of their kids and be able to help you. I pray for God's wisdom for you and your husband as you look into getting treatment for your daughter.
05-06-2006, 09:42 AM
I have a cousin whose son had this...they discovered it while she was still carrying him though...she was induced early at the nearest children's hospital and then he was taken right into surgery to have it fixed. I don't know if that helps you any, but he did have corrective surgery and is doing great.
They have had no side effects or problems since the surgery that I am aware of. I don't know if that is of any help to you or not.
We will be praying for you and your dd.
05-07-2006, 12:00 AM
Thank you both. I really appreciate both replys. I had never heard of the condition until we found out she had it. I was hoping she wouldn't have to have surgery...but, we kind of figure that would really be the only way to fix it in the long run. Both posts are very encouraging and I am really glad that your cousin is doing fine with his condition after surgery. That is very encouraging indeed. This infection and fevers have really scared us quite well. We just want what is best for her and so that's why I was wondering what treatment for this was given to others. I was also worried that even having surgery that maybe the problem may come back...so that post was very uplifting...thank you both.
05-07-2006, 12:47 PM
I just wanted to let you know that I will be praying for you and your family. I have not heard of this and can't even imagine what you are going through. It sounds as though it was found early. Have you been able to get 2nd & 3rd opinions?
05-07-2006, 01:58 PM
I'll be praying for your little girl! Stephanie
Your little one will be in my prayers. Keep us informed as to her condition.
05-10-2006, 12:17 AM
Thank you all for your prayers. We really appreciate them soo much. We have not gotten any second opinion yet(i'm doubting our insurance would cover it...they are only approving these docs as our basic co-pay and giving us the run around on surgery coverage we may have to cover 20% to 60%...hubby called about it today...since we are pretty sure she is going to have to have surgery). Our state only has two pediatric urologists in the whole state and they are both at the same hospital four hours away. So we will be making that trip to the children's hospital monday to see one of the pediatric urologists. As parent's we worry...we worry alot about our little one. We know that she is in the best hands...the Lord's. But, we still can't help but to worry. We have a lot of prayer going on for her. So we find comfort in the Lord and that so many care for her and are sending their prayers along for her as well. As of right now she is healthy and has been infection and fever free since she got out of the hospital. She has been on some antibiotics so it keeps anything from flaring up. She has been her old self....going in every direction, pulling stuff off the tables, trying to go into every cabinet in the house, and giggling the whole way...basic baby stuff :D You couldn't tell that she had even been in the hospital last week if you see her. So we have been praising the Lord for that. That the meds are working and she is feeling great.
05-10-2006, 08:38 AM
Hmmmm. I'm trying to think of something to help. Can you find out how far the next ped urologist is? Call as many as you can and speak w/a nurse and explain your situation. (Some nurses are very informative.) Sometimes ped offices are willing to work w/patients w/charges and things. Maybe see what your rights are regarding other opinions w/insurance. Demand to them to get a second unbiased opinion (obviously the 2 working together are likely to have the same opinion).
Maybe this will help. http://www.insurekidsnow.gov/ I think you can apply for some part that helps cover a portion that the insurance won't cover or the co-pay or something. It's worth a look... applying no matter what wouldn't hurt.
I am so glad to hear she is feeling well. :D I am still praying for you.
05-16-2006, 12:20 AM
I want to thank you for the link. I looked up our state and the program they offer....I have checked before...hubby's income is over the alloted amount nec. to qualify(one those based on income) and the other programs they offer we don't qualify..because we have full coverage through hubby's work. I had surgery a couple of years back and I was covered 100% because it was within the company owned hospitals...if it is outside the company owned hospitals...it's 20% if there is another hositpal that will do the procedure..but, none of the company owned hospital will...60% if a company owned hospital will do a procedure...but, you just decide to go off to some other hospital. :cry: Hubby does very well for us and I stay at home...but, I think everyone could relate being on a budget. No matter what you make ...being a one income family requires a good budget. But, today we went to the children's hospital. Since there are no other pediatric urologists in our network or state...no 2nd op. We did find out we will have to pay 20% of her surgery(which is a blessing cause it could have been 60%). They are planning on surgery to correct her condition. They also found some extra tissue and extra ureter(normally you have one) on her right kidney. So we have a nuc med test set up for sometime this week. Based on it will be what surgery they do. If the extra tissue and extra ureter are in good working order they will do a outpatient surgery. They will basically go up through the bladder and bust the uretrocele. If all is not in working order they will have to go in with incision around the back area and remove the tissue...but, leave the ureter. She should have her surgery within the month. They put her on some antibiotics. She has another appt with her local doctor for a cath tomorrow to check her urine...just to make sure no bacteria is present. Which she is feeling fine...so I am sure that will be negative. But, caths are still horrible. The doctor is very confident that there will be no more problems after the surgery. So we are doing a lot of praying. We really want her to have the outpatient surgery....no incisions and less recovery time. We were very blessed that he agreed to have this weeks nuc med test done at the hospital hubby works at and hubby is able to set all that up tomorrow. Which means the test is 100% covered and I think she will be more at ease there(otherwise we would have to pay 20% and travel four hours there and four hours back)...since she will be seeing some familar faces. So in the end we know we are gonna have to pay 20%...but, I will be honest... I was kind of hoping we would be able to do it at the children's hospital(I was hoping too that we would get the 100% coverage). Just because I feel they are more equipped to handle children's needs more...since that is what they specialize in. But, today as we sat in that waiting room. The financial worries just kind of went out the window. When you see all the children that are wheeled in and out that are just really really sick. It makes you so grateful that your child is in there for something that is curable and the doctor is really confident on their outlook after their procedure. Granted no parent wants their child to face surgery of anykind. I think the Lord really knows how to humble you sometimes. So we decided that we will just offer a set amount per month for the surgery to pay it off. If they take it they take it...if they don't they don't. We will still send in that amount we have set. Then apply all of our income tax refunds too it also. I believe that the Lord will provide for us a way to pay for it. Hubby is also gonna take more call at work every other weekend. So I think things are gonna turn out good. Right now we are anxious to get the surgery done and over...so she can start to recover, not have to worry about anymore infections, and we want have to worry so much...though I am pretty sure with children their will be something else to come up to worry about :lol: I appreciate your prayers and everyone being helpful. Please continue to keep her in your prayers...she is gonna have a tough month. Right now though she is still herself...full of energy and smiles. It's hard to believe she even needs surgery.
**sorry so long**
05-17-2006, 01:23 PM
Wow, you have really learned a lot from this, i.e. you are stronger than you think! - that's great
I know what you mean w/finances. My dh has so many med bills it's hard to keep track. Call the finance dept at the hosp and ask to fill out hardship papers. It can be a lot of work and time, but worth it. I've done it, some have helped, some not. Even if you think you make enough, the hosp may still give you a discount - even 10% would help. If you have ?'s pm me. I encourage you to call now, it takes them a while to process what they receive. The hosp should be fine w/a set amount per month. Start saving now, but don't send any in until they give you a final bill after insurance. Just take care of your baby for now. I know how overwhelming things can get when you worry about health, costs, and family.
You are right. God will provide and He will be watching over your family. I am praying for you.
05-27-2006, 01:30 AM
I will get hubby to go around to H.R. and ask about the hardship papers. I had never heard of them...but, like you said an extra 10% off...will leave us oweing only 10%. We know that we will have to pay 10% of the surgery. We just received her bill in the mail yesterday for her hospital stay. Which was covered 100%. It was over 13,000.00!!!!! Praise the Lord we didn't have to pay a dime. But, judging by just a hospital stay and the few tests they did on her...I am afraid to see what surgery runs and then if she has to have a hospital stay on top of it :? But, we have been doing great on cutting back. Hubby has been taking alot of extra call. We are also selling a few things. If push comes to shove we have decided to take some money out of our 401K. We will pay a great penalty...but, we feel it would be worth it if the monthly payments are going to strain our budget too badly. We plan on shooting for monthly payments and we are praying that it being a children's hopspital they may show some compassion to parents and that a payment plan will be alright with them. So at this time we know we have exhausted all our options and the stress is coming off a bit. I mean what else is there to do? We just have to find comfort and realize that it is in the Lord's hands and out of our control. So why worry about it? So that is our pep talk we give each other. Basic simple advice....trust in the Lord. As for our little on she is due for her nuclear test tuesday(she has had an ear infection this week and then they had to wait for protcol from the children's hospital). However, they told us today they will not put her under unless we request it. So of course we will not be doing that...unless it's a last resort. She should have her surgery the following week. Which puts her two weeks away from it :cry: We just don't want to chance her maybe going under two times in two weeks. As for right now not even a pesky ear infection has slowed her down. She has learned to walk pretty good. Too cute...she is soo tiny...toddling around the house. She has started calling hubby "dada" directly to him. Which just melts his heart of course. I know everything is gonna work out. God never makes mistakes and I know he has a plan for everything. Everything happens for a reason. But, we still worry. I think it is natural. I am scared and anxious about the surgery coming up. But, at the same time I think we will feel some relief when it is over with. In that we will no longer worry about her getting anymore infections and such. I am also grateful they found this early and hopefully she will not remember a thing as she gets older. I do feel bad for her that she will have some recovery time and her learning how to walk here recently I think that is gonna fraustrate her. But, I have really appreciated your advice and talking to you tracy...thank you.
06-06-2006, 10:59 PM
Well DD is scheduled tuesday for outpatient surgery. This is a blessing and we are praising the Lord. It was a huge relief to know now that she will not need the surgery where they cut away the extra tissue. This procedure they go straight up through the bladder..no incisions. But, we are still anxious about the surgery. To top it off the Lord blessed us even more. Our insurance company now says no matter what they highest we will have to pay on surgery is 2500.00 they can not charge us for anything more. If for some chance our 20% goes over 2500.00 then we pay nothing at all!!!!!! So things are looking up in our little doodie's situation. The doctor said in a day or two she should be doing much better after the surgery. They originally thought they would have to do a cath on her for the rest of the week after surgery...but, called yesterday....no cath!!!!!! So her birthday party is that following sat after the surgery. I think she well deserves her cupcakes and ice cream :D
Wonderful news all around! The Lord truley is blessing your family in this time of need. I will keep you all in my prayers.
06-07-2006, 08:32 PM
I'm so happy. I have really been praying for you and I'll be praying tues.
Praying for God's comfort on the whole family and healing touch on your DD..
06-16-2006, 11:39 PM
Thank you for all your prayers! Every thing went great. She had her surgery as planned on tuesday. She was only in surgery for about 30 or 40 minutes. However, the doctor kind of dropped some uneasy news on us. We were told that once this surgery was done...the problem would be corrected. According to her doctor there is a 40 to 50% chance that she can have bladder reflux. Which can lead back into infections with her. Also her uterocele can grow back together...since technically all they did was make an incision and bust it. So he says that if she has anymore UTI's or any other infections...He will have to go in and reconstruct her whole bladder. Not the news we were looking for. But, there is some bright news. If she rocks on for a few years with nothing happening at all...we can consider this problem corrected for good. So we are just gonna continue to pray on it. As of right now she is doing great. She didn't run a fever at all. She is still a little cranky when she goes potty...but, that is normal for the next few days. So we are very very very blessed. Our stay was very nice. We stayed at a ronald mcdonald house. The staff was very nice to us and it was very affordable. They also gave us some passes to a science museum the day before her surgery. Which she had a blast at. So right now she has an ultrasound planned for next week, another doctor's appt next month, still on anitbiotics for the next four months, and another VCUG in four months (basically dye shot to kidneys). We are praying all these tests come back great! Meanwhile, she turns one next tuesday. Her birthday party is tomorrow. She will have cake for the first time. I know she will have a blast. My niece is coming over to play in the little pool we bought her. She has not been cranky all the time since the surgery...she is still up for playing and getting into everything around the house :lol: I think she is gonna be just fine. Like hubby and I believe...there is a reason for this and one day we will know why.
06-17-2006, 07:32 AM
I am just reading all the threads now. WOW! What an ordeal you have been through. I am sorry I was too late to be praying. But I always pray in general for all cmoms and their issues! :D
I hope that all tests come back with great news and this is over for you. It is so hard when something is wrong with your little ones. I remember being so upset that my third had to have eye surgery at 18 months.( he did again at 2 1/2 as well) I cried out to God and said, " Why are you letting this happen to me?" I had one of those God moments where the thought comes into your head instantly and you know it is not your own. And I heard, " This is my plan for Samuel. This isn't about you." It hit me then that God DOES have plan for each of my babies and yes, it will involve me becasue I am the mom, but they have their lives to be worked out as well. Sam did great, and God blessed us that despite his horrible strabismus ( eyes crooked) He sees 20/20, never needed glasses and the surgery worked and his eyes work together almost all of the time.( You see it every now and then when he is tired) Keep up your faith. He has that little one of yours right where He wants her. She is blessed to have such a great mom and dad!
06-20-2006, 12:46 AM
Thank you for posting....your post is very encouraging. By today she is everywhere as usual. Everything is really working out. She is still fever and infection free. Going potty no longer bothers her and she seems to have her energy level fully back. It's really funny cause I have been so worried about the infections coming back. But, it just seems like this past week the Lord has just put people in my life to tell me something encouraging about what they have went through with their children. I am very serious when I say that it has really helped to hear about everyone else's situations and the outcomes. I feel very blessed. Cause naturally I am a worry wart. But, when you hear about others and their situations and just the positive outcomes and what the Lord has done for them as well.....it just gives you comfort.