Worried About Emily's Upcoming Test

[joneshockey]

Baby Emily is having a pre-op test done tomorrow morning. I am a little bit worried about it due to the fact that it is a test that requires dye to be run through her kidneys, ureters, and bladder. Has anyone ever had an IVP (Intravenous Pyelogram) test done? It should also prove to be an interesting morning, since she isnt allowed to eat at least 4 hours prior to the procedure. I am unsure how I will be able to hold her off that long to eat... She will probably be a VERY cranky baby by the time I can feed her. (I guess the test will last anywhere from 30 minutes - 3 hours!) She also has an appointment with her Urologist & Nephrologist later in the day. I will keep everyone posted as to how things go.

 

[HaoZi]

Hoping the best results for Emily and you, and that it goes as smoothly as possible.

 

[keista]

Good luck to you both. Will keep you in my thoughts tomorrow.

 

[tiredmommy]

I have no experience in this but crossing fingers and sending prayers your way.

 

[Hound dog]

I've had literally dozens and dozens of them. It's a no sweat xray. And that's what it is, an xray made much clearer with the injection of a dye. Dye won't hurt her, they use one that is hypoallergenic now too. Only reason they don't want her to eat is they want nothing in her stomach and bowel to obstruct their view. The only part she won't be thrilled about is the IV to inject the dye.

As far as eating........you could call the doctor office and ask if it would be ok for her to have a bottle of water. Or when Travis had to have his stomach /esophagus xrayed and couldn't eat.....I gave him a binky dipped in juice. (juice was to entice him to take the binky and suck a while was not enough to bother the test)

But other than the whole not eating thing and the insertion of the IV.......it's not a big deal. Nothing to worry and fret over.

Hugs

 

[Hound dog]

Oops. Just noticed it was pre op testing. Nix the water. Hopefully they get her into xray quickly.

Hugs

 

[AnnieO]

She's not going to like the IV, and may pee neon colors, but she will be just fine. The dye is mostly saline, anyway...

 

[joneshockey]

Oooohhh Boy... The test was NOT a fun one, due to the fact that it took 4 tries for them to get an IV in her! She did great the first time they poked her, but screamed for the 30 minutes that it took when trying the 2nd, 3rd and 4th time! The urologist said that her ureter tubes where there but that they werent as big as he hoped that they would be in preparation for surgery. He also is keeping her on the stronger antibiotic (the one she has been on for the past 3 weeks) until she has the surgery, which made me VERY happy, since it is the only one that has worked so far to prevent the infection from returning. I have to collect a urine smaple from her next Tuesday to make sure that she doesnt have a Urinary Tract Infection (UTI) starting, since he can't do surgery if she has an infection... Let's keep our fingers crossed that surgery can happen as planned. I have to leave in a few minutes to take her to see the Nephrologist, which should also be an interesting appointment as well, since they aren't yet aware that she will be having surgery in just a couple of weeks. At this point, all I can say, is THANK GOD for Children's Special Health Services (part of the medicaid system, except it is paid for by the family on a sliding scale based on income), which we have supplemental health insurance coverage for her because at the rate we are going we wouldn't be able to afford ALL of her medical bills!

 

[AnnieO]

Sounds like it went okay, if not perfect!

 

[joneshockey]

Emily's appointment with the Nephrologist went pretty good also today. The only thing that she changed was when Emily was to go to the hospital prior to surgery... She wants her admitted the night before so that they can start IV fluids right away before she is dehydrated from having to fast before surgery. The Dr. thinks that because she fasted for 4 hours prior to her test today it made her dehydrated and that is why they had such a hard time getting an IV in. So now it is looking like she will be admitted on August 1 and then surgery at 12:00 PM on August 2.

 

[Hound dog]

Hmm smart doctor. That will be easier on little Emily. One poke as opposed to several. If hospital staff are smart (and they usually are) any blood work needed upon admission will be done at the same time they do the IV to avoid yet more pokes.

What is it exactly the urologist is planning to do this surgery? If you mentioned it before I either missed it or forgot.

 

[joneshockey]

She has what is called a duplacated collecting system,which means she has 2 uerter tubes that come off each kidney... one of the tubes on her right side has a partical blockage where the tube connects with the bladder which causes fluid to back up into the kidney. For some reason this is also the tube that keep getting infected, so what the urologist is going to do is take that tube and tie it off to her remaining tube and remove the excess tubing. This will hopefully (fingers and toes crossed) eliminate all or most of her Urinary Tract Infection (UTI) infections. Her urologist has only been doing this procedure for about the last 10 years or so. I think he said he has done around 20 of them and that ALL of them have been very successful. He said that there will be little to no pain involved after the procedure and that most kids' discomfort comes from not being able to pass gas or stools. After surgery she will have a small tube that comes out her side to drain and urine that still may be around the kidney. This tubing will stay in for about 1-3 weeks until all of the fluid is completely done draining.

I am also VERY glad that her Nephrologist did suggest early admittance just so Emily does have an easier time with the whole thing.

 

[Hound dog]

Works fairly well with adults too, believe it or not.

Removing the blockage should eliminate the infections. It always has for me. Not to mention any discomfort she's having from the blockage, and yeah there is discomfort with it.....more along the lines of pain.

Be sure to keep the site of the drainage tube as clean as humanly possible. Ask the urologist for directions, not just the nurse. If it's a nephrostomy tube, which I'm thinking it is....infection is a serious threat. Should be ok if you are careful to keep the area clean and dry and avoid pulling on the tube. I say ask the urologist because in all honesty......the nurse may not know. I know you used to have to attempt to keep the area as sterile as possible, not sure if that is the case. My last nephrostomy tube was years back.

Give lil Emily a kiss from me. She's such a cutie pie and a lil trooper.

Hugs

 

[Lothlorien]

Sorry she has to go through all of this at such a young age, but I'm glad they caught the problem and it's fixable. You must be exhausted from all went on.

 

[joneshockey]

Bad news guys... I just spotted MORE mucus in her diaper this afternoon --- I am waiting for a 2nd diaper confirmation, but it looks like she MAY be starting another infection - If it is confirmed I guess we will probably be heading back to the urologist tomorrow.

 

[Hound dog]

Oh, well, darn it. I'll be praying hard no infection. Or if it is they can clear it up quickly.

Hugs

 

[KTMom91]

Poor baby girl! Hugs and prayers going out that it's not an infection.

 

[joneshockey]

Emily continues to have mucus in every diaper. After a call to her uroloist yesterday afternoon, I ended up in the ER last night... Emily does have another bad Urinary Tract Infection (UTI) infection! They took a urine culture (which we wont have the results of until Monday), did bloodwork and an ultrasound. The urologist on call came in to see her while we were there and decided to just give her a stronger antibiotic and sent us home - Which REALLY surprised me, but I was very happy! We will see how she acts and does today --- I hope the new medicine does its job so that we don't end back up in the ER!

 

[jbrain]

Hi,
just saw this thread--my difficult child 1, E, was born with 2 kidneys on the right side and the ureter to the smaller kidney kept getting plugged up. She had surgery at 6 months old to remove the extra kidney and tie off the bad ureter. She too kept having Urinary Tract Infection (UTI)'s up until the surgery. She did quite well after the surgery, only had one hospitalization for a Urinary Tract Infection (UTI) after that. She did, however, have to have bladder surgery at the age of 12 because of a ureteroseal on the bladder--I never did understand exactly what that was!

Anyway, just wanted to lend my support and let you know I have some understanding of what you and baby Emily are going through! Hope the antibiotic gets rid of the infection and that surgery all goes well--keep us updated.

Hugs,
Jane

 

[joneshockey]

Well.... All I can say is we just spent the past 4 1/2 days in the hospital because Emily's infection wouldn't clear up on its own... she also quit eating while we were there so we spent the past couple of days really montioring her eating intake. I am now getting more and more worried about surgery being cancelled if she isnt 100% by Monday... Her urologist came in this AM to see her and did say that he has in the past operated on kids with infections, but prefers not to due to the added risk --- let's keep our fingers crossed that we can keep her infection-free until then! I cant afford to have the surgery put off due to cgoing back to work on Aug. 9, but also don't want to have the added stress of knowing she is sick when the surgery is performed. Thanks for all your words of support and continue to pray that everything goes as scheduled.