A sick kid... Need advice.

Radical Edward · #1 01-15-2011, 01:05 PM

My daughter is 3 now. Can you believe it? She's sweet and amazing and adorable as all get-out. However, around mid December she started complaining that she was itchy "down there" then she started to complain that her stomach hurt. So, we took her to the doctors. They did a test and said that she had a UTI. No big deal.
A week later she was done with her antibiotics and she wasn't itchy anymore, but she was still complaining that her stomach hurt. We brought her back to the doctors and they had her give them a urine sample. They said they'd call us if anything came back abnormal in it, and let us know.
2 days before Christmas my daughters dad got a call at 6:30pm from her doctor saying that they found blood in her urine and they wanted to schedule an ultrasound ASAP just to make sure it wasn't anything serious. When she went in to get her ultrasound done they found that her left kidney was enlarged, ( They also took her blood this time and said her white blood cell count is low.) so they scheduled her for a test that I can't remember the name of where they insert a catheter and inject a dye into her bladder so they can track the flow of her urine. They thought it might be a birth defect that causes the urine to flow the wrong way sometimes... We're waiting for the official results of the test, but the technician said he didn't see any back-flow and the doctors said that if it wasn't this then it could be something really serious. (They wouldn't say what.)
Regardless, I am super stressing out. Even if it's what they think it is, they said the only way to fix it is with surgery and I'm really worried about her. In the meantime she's been cranky and having "accidents" and saying her stomach still hurts. I feel so bad for her. They've been taking her blood and she had to get vaccines the other day, and with all of the tests she's been through a lot and there seems to be nothing I can do for her. I just don't know how to handle this. Any other parents out there who've dealt with similar experiences?

Sorry about the long post.

fenderhutz · #2 01-15-2011, 01:14 PM

I have a 3 and 5 year old. My kids have been pretty sick before and as a parent you can feel helpless at times. I have no advice, but I wish you both strength through this.

Radical Edward · #3 01-15-2011, 01:16 PM

Quote:

Originally Posted by fenderhutz

I have a 3 and 5 year old. My kids have been pretty sick before and as a parent you can feel helpless at times. I have no advice, but I wish you both strength through this.

Thanks. It's hard not to cry when I think about everything she's been through and I appreciate the support.

machine gewehr · #4 01-15-2011, 01:28 PM

I'm not a parent but I feel for you.I can imagine feeling helpless and it's really unplesant.

All I can do for you and her is to wish the best.

Also,just keep in mind,many sicknessess have a cure and don't let her you feel that bad.

Skitch it! · #5 01-15-2011, 01:29 PM

I'm so sorry to hear about this situation Mikaela, I hope there is some resolution for your young one soon, take care.

EBodious · #6 01-15-2011, 02:05 PM

hey.

my son went thru something very similar when he was an infant. he could not tell us what was up and we spent 6 months getting wrong diagnoses. eventually we got it worked out. i believe it was called UVJ (or UVA) blockage. basically, one part of his ureter (tube that connects the kidney to the bladder) was not working. urine back flowed into his kidney causing major infections and an enlarged kidney. it was serious because it went unchecked for a long time. after antibiotics he was healthy again. eventually he had surgery and they removed the little piece that didn't work. the surgery happened when he was 6. he was on daily antibiotics for maybe 3 yrs.

one of his symptoms was screaming (i mean really screaming) whenever he had to poop. thus, docs hunted for a G.I. explanation. also, he did not grow at all for maybe 4 months. after clearing the infection he started growing again. now, at 15, he is 6ft.

i am at work and have a very busy afternoon. i am very sorry, but i cannot get into more discussion now. i will try to talk more when i get home (though i won't have much time tonite either). i will stay in touch if my experiences can help y'all out.

don't worry, if she has ureter blockage you are on the rite path and it will work out. it is stressful and painful for her, but it will come to a healthy end.

hang in there. i will check back as soon as i can.

bwv1013 · #7 01-15-2011, 02:11 PM

no advice from me, but prayers going your way friend.

root fifth · #8 01-15-2011, 02:17 PM

I'll put you in my prayers!!

HaMMerHeD · #9 01-15-2011, 02:24 PM

My daughter i about to be 7.5, but she has never been seriously sick. The worst thing to happen to her so far is her mother passing last April. About the only things I can do about it is to be open and honest with her, help her deal with her grief as best I can, and make sure she has everything she needs in terms of support.

For you, I think the best thing you can do is make her as comfortable as possible, and take appropriate action when the tests come back. I know it is hard to stay strong for her, but that's what you need to do. I think she may end up being a lot more scared if she sees how scared you are of it all.

Relic · #10 01-15-2011, 02:35 PM

Been there, though with other ailments. My oldest son spent his first week and a half of life in intensive care, the others have had their scares as well... it's soooo hard to deal with and so frustrating!! Hang in there kiddo, it'll turn out alright.
I think that what EBodious wrote is important and may very well even be what your little one has - you just have to keep it up with teh docs until they nail it fro sure. Just stay strong and we're here if you need us.

**nutdog** · #11 01-15-2011, 02:47 PM

Quote:

Originally Posted by root fifth

I'll put you in my prayers!!

Me too. And educate yourself. Sometimes doctors miss things, get distracted or get stuck in a mindset. Search the web and ask questions. I know it must be tough.

MakiSupaStar · #12 01-15-2011, 03:04 PM

Hang tough. Be patient. Breathe. She'll pull through.

hrodbert696 · #13 01-15-2011, 03:09 PM

We've been lucky with our kids not having any really serious physical problems, but we've known families fighting through some pretty terrible ones. I can't give you any more particular advice than to be there for her, trust the doctors, and keep your and her sense of humor going. The doctors do know what they're doing and she'll be ok, it just takes time to get there. Never hesitate to ask questions or to push for clearer answers.

capnsandwich · #14 01-15-2011, 03:11 PM

Ask your doctor if there's any kind of over the counter medication that will help her with her stomach. That may help her until they find out the issue. I have a 3 year old son and a 1.5 year old daughter so I feel your pain. Praying for your situation.

()smoke() · #15 01-15-2011, 03:48 PM

i definitely understand where you are at right now, we've recently been through a very serious medical issue with our young son and at times, it was almost unbearable for me to experience what he had to endure, but i leaned heavily on my faith and my values instilled by my parents and grandparents so i could be strong for him and my family through the ordeal

what i can offer is the idea that you should always keep your hope and remain the optimist--i firmly believe young children can 'sense' this from those they trust, and she needs you to be strong...try to be as strong as her, that's what i did

Honk'n_down-low · #16 01-15-2011, 03:58 PM

Stay on the Doctors for answers, don't assume anything you have to manage the folks that are providing her care, never assume they are doing something or taking care of something, ask questions, and be a vocal advocate for your daughter.

Follow your instincts - question anything that does not sound right, keep a journal of what they have tested and what results they have provided. Also use the journal to write down the questions you have or think of for the doctors when you are not at the hospital.

If they promise you an answer - note it and follow up with them, don't wait for them to do anything - stay on them in a polite proactive way to be sure they are doing all they can for you daughter. My daughter has on average 100 visits a year to various doctors, this is advice based on my experience.

Understand just because someone is a Doctor or Medical Professional that they are not always right, question anything that seems odd or that you don't understand - be persistent and follow you instincts as a parent they are most often right. God Bless you - wish you the best outcome!

Radical Edward · #17 01-15-2011, 04:31 PM

Quote:

Originally Posted by EBodious

hey.

my son went thru something very similar when he was an infant. he could not tell us what was up and we spent 6 months getting wrong diagnoses. eventually we got it worked out. i believe it was called UVJ (or UVA) blockage. basically, one part of his ureter (tube that connects the kidney to the bladder) was not working. urine back flowed into his kidney causing major infections and an enlarged kidney. it was serious because it went unchecked for a long time. after antibiotics he was healthy again. eventually he had surgery and they removed the little piece that didn't work. the surgery happened when he was 6. he was on daily antibiotics for maybe 3 yrs.

one of his symptoms was screaming (i mean really screaming) whenever he had to poop. thus, docs hunted for a G.I. explanation. also, he did not grow at all for maybe 4 months. after clearing the infection he started growing again. now, at 15, he is 6ft.

i am at work and have a very busy afternoon. i am very sorry, but i cannot get into more discussion now. i will try to talk more when i get home (though i won't have much time tonite either). i will stay in touch if my experiences can help y'all out.

don't worry, if she has ureter blockage you are on the rite path and it will work out. it is stressful and painful for her, but it will come to a healthy end.

hang in there. i will check back as soon as i can.

This is what they were testing for the other day and we're waiting for the results, but talking to the technician who was doing it, he said that he didn't see any back-flow of the urine so he doesn't think that's it. :/ But, we have to wait for what the specialist says for a definite answer.

Also, thank everyone for your prayers and encouragement. I've been through a lot with her. Seriously, thank you. It's been hard for me to even talk about and didn't really hit home until the other day how serious this is turning out to be.

And Down-Low, I do keep track of her visits and stuff, generally but recently I started a new job and her visits have been during the days I work so I'm just hearing things from her dad. :/ It really sucks, but I need this job and she needs me to keep it, too. I'll definitely talk to him about keeping track of stuff, and I've been telling him which questions to ask, but it still sucks to not be there.

I lost my last job because I took some time off to take care of her for some other stuff, so yeah.. I'm trying really hard to keep this one.

Also, here's a picture of the cutie I just took.

warwick.hoy · #18 01-15-2011, 05:06 PM

Good luck to you and your girl. Keep your stick on the ice.

EBodious · #19 01-15-2011, 06:13 PM

hey again. lots of great advice here. being strong for them is key. they look towards us for their clues as to how to react.

and, unfortunately, docs, nurses, and techs are a mixed bag. from our first dr appt thru to our week in ICU, we had people make nearly fatal bad decisions and life saving good decisions. being vigilant and expressing your concerns is a must. not to scare you, but we had one nurse come in one nite to give our son some meds. my wife said to her that the docs hadn't told us about anymore shots that nite. she hesitated, looked at our chart, and realized she had the wrong room! its frustrating, but they do have a lot of patients and rooms. that is why the parents have to stay on top of their kids' med care. we are the only ones focusing exclusively on our kids.

so, if the tech didn't see back-flow then maybe its something else. i know that blood in the urine was not an issue with my son. there are a lot of parts down there and the workings are complex. if it is a bad spot in the ureter, it is a quick operation. they can go in thru the side and miss all the muscles and tendons so it is a very quick recovery. my son's left kidney is twice the size of his right one, but so it goes (no contact sports for him).

it is good that she could tell you that it hurt and that you guys got on it rite away. in our case, i believe that the stomach and G.I. pain was from pressure on the bladder which was infected. could be different for y'all. and i know her dad is not one you want to trust with her med care, but you may have to give him this chance to step up. however, there is nothing wrong with calling docs and bugging them to fill you in. they may resent it but this is your kid and they will have to deal.

stay strong. i survived watching lots of blood draws and catheters (ouch!). this is a part of parenting and you will find you have a lot of strength in you. moms are tough as nails. someday, this will all be a story for a TBOT thread for another new parent...

take care

Radical Edward · #20 01-15-2011, 07:17 PM

Quote:

Originally Posted by EBodious

hey again. lots of great advice here. being strong for them is key. they look towards us for their clues as to how to react.

and, unfortunately, docs, nurses, and techs are a mixed bag. from our first dr appt thru to our week in ICU, we had people make nearly fatal bad decisions and life saving good decisions. being vigilant and expressing your concerns is a must. not to scare you, but we had one nurse come in one nite to give our son some meds. my wife said to her that the docs hadn't told us about anymore shots that nite. she hesitated, looked at our chart, and realized she had the wrong room! its frustrating, but they do have a lot of patients and rooms. that is why the parents have to stay on top of their kids' med care. we are the only ones focusing exclusively on our kids.

so, if the tech didn't see back-flow then maybe its something else. i know that blood in the urine was not an issue with my son. there are a lot of parts down there and the workings are complex. if it is a bad spot in the ureter, it is a quick operation. they can go in thru the side and miss all the muscles and tendons so it is a very quick recovery. my son's left kidney is twice the size of his right one, but so it goes (no contact sports for him).

it is good that she could tell you that it hurt and that you guys got on it rite away. in our case, i believe that the stomach and G.I. pain was from pressure on the bladder which was infected. could be different for y'all. and i know her dad is not one you want to trust with her med care, but you may have to give him this chance to step up. however, there is nothing wrong with calling docs and bugging them to fill you in. they may resent it but this is your kid and they will have to deal.

stay strong. i survived watching lots of blood draws and catheters (ouch!). this is a part of parenting and you will find you have a lot of strength in you. moms are tough as nails. someday, this will all be a story for a TBOT thread for another new parent...

take care

Thanks. Yeah, her dad and I got into another fight a while back and I just came over the next day after we were calm and I told him, "Look. Our daughter is what's important here. I don't care what you do, and you shouldn't care what I do, so long as she is happy and safe. We need to stop this petty **** and COMMUNICATE for the sake of our daughter. I'm tired of all of this, and it's not good for her."
He was still all irritable for a day or two, but since then he's really started listening and working with me on stuff, instead of just being angry all the time. So, long story short, we're communicating better and she's doing a lot better because of it. I'm EXTREMELY happy that he's finally listened and started focusing on her, instead of his anger issues. I'll have to play it by ear for the appointments that I can't be there for, but I'm going to try to make all of the ones I can so I can do the questioning.
As far as calling the docs and asking questions go, I can't do that. He has physical custody of her and I don't and her doctors wont tell me anything without him being there. :/ Sucks, but what can you do?