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vcug + renal us for 3 year old: seeking information (long)

Posted by garden_of_darwin (My Page) on
Tue, Feb 7, 06 at 12:39

Our 3 year old daughter has to go for a VCUG with sedation and a Renal Ultrasound following a bladder infection that occurred in November (they're slow in scheduling). According to the ped and all online sources I've checked, this is normal procedure, i.e. not an indication of any suspected problem, just standard followup for a bladder infection in a child of this age. Whew!

Here's the problem: Our ped is out on maternity, her office is backlogged hence no chance to chat with the covering ped. The radiology department called this morning, but the person calling was not familiar with the procedure and her knowledge of what we should expect left me feeling rather unsettled. For instance: she indicated that DD could eat/drink freely up to 1/2 hour before procedure time, but when asked about interference with anesthesia, she recanted (however, still didn't indicate a timeframe for cessation of eating/drinking and/or whether other meds could be taken before hand). She also didn't take any medical history which I understood was supposed to be a part of her call. I called back and spoke with someone in pre-registration who put me through to the long term radiology employee who knows everything, but she's not in today. Ack!

We've always prepared our children for any type of medical procedure by providing them with as much information as possible beforehand, answering questions, role-playing with dolls, etc., but I'm having a hard time getting her prepared without the proper information. The procedures are scheduled for Thursday morning. HELP!

Does anyone here know what to expect? The Renal Ultrasound requires a full bladder. What does that amount to in terms of H2O consumption for a 3 year old? How long ahead of time? Will/should I be able to be with her during this part of the testing? How long will it take? Does it involve injecting any dye into the urethra?

The VCUG is supposed to be under sedation. I assume that means that they'll want an IV and they'll use a mask for anesthesia. Is that right? I'm also guessing that I/we will not be able to accompany her for this part. Am I wrong on that (please say I'm wrong on that!)? No food/drink/meds after when for an 8:30am appointment? Can she have a comfort item (i.e. blankie)? Are there restrictions after this procedure/sedation, such as not eating for a certain length of time? Concerns about activity post-procedure (she'd probably love to go eat at her favorite restaurant)?

Anyone here a Radiology/Anesthesiology expert? Anyone had these procedures or had a child undergo them? I'd appreciate any and all input. I'm going to try to call the hospital Ambulatory Surgery Center to see if someone there can talk to me, and I'll try back tomorrow for the regular employee, but in the meantime...I need to be preparing her!

Thanks in advance!
Susan


Follow-Up Postings:

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RE: vcug + renal us for 3 year old: seeking information (long)

oy, Susan, what a day for that employee to be out!

I would call back and speak with the radiologist. There's really no excuse for them not preparing you for this. Or, call and talk to your ped's office and insist on getting a call back today.

If they said "sedation," I'm guessing that means a pill of some kind, or maybe an i.v. drip, rather than general anesthesia. If not, here is our experience with anesthesia:

My ds has been under general anesthesia a few times. In each case, I insisted on being there while they put him under. One hospital had a policy which accommodated this, but the other did not. I insisted anyway, and they gave in. I will warn you, though, that it is very scary watching your child go under, so expect to choke up a bit once she's anesthetized.

Once she's under, she won't know whether you are there or not, so then they have you wait until she is brought out to recovery. They usually leave the parent in the waiting room while they wake up the child, because they don't want parents there if there are complications. Again, you can let them know you want to be in there immediately once she is awake.

As for a blankie, they will likely let you bring it in with her, and then remove it once she is under. That way if she wakes up and has stomach issues (quite common for kids), she won't ruin her blankie. For the first little bit after she wakes up she will be pretty out of it and won't miss it. But you can bring it in with you when you go in.

Now, this is just our experience with general anesthesia. If they are using a more of a sedative, obviously none of this will apply.

I hope someone has had this done and will post more helpful info!

Good luck to you and please keep up posted. I'll be keeping you in my thoughts.


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RE: vcug + renal us for 3 year old: seeking information (long)

I hope I'm not out of line saying this, but I honestly don't see why they are putting your 3-year-old through sedation and testing for one bladder infection. My dd had a bladder infection at that age, too, and my doctor told me that while preschoolers generally don't get bladder infections, it can happen. He said we'd treat it and then keep an eye on her to make sure it didn't come back or recur, and it hasn't (that was 2 1/2 years ago).

I think it's good to be safe, but unless there is some indication that an abnormality may be present, I would find the trauma of the procedure outweighed the supposed benefit.

Perhaps there is a very good reason why your doctor wants your little one to have this test, but I would be inclined to question it. These days, doctors often feel they must do every test in order to avoid possible lawsuits.


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RE: vcug + renal us for 3 year old: seeking information (long)

seeking -- You're not out of line -- you raise a good point. I too questioned the "necessity" of the procedure and the sedation. My husband, ped and I discussed the risks vs. the benefits and given my history of bladder problems, we decided the testing would be worthwhile to rule out any physiological abnormalities. We chose sedation over not because we were concerned that without it, the procedure would be difficult at best to perform, and we don't want to have to repeat. That said, I'd like to mitigate the trauma by preparing her for what to expect. She's a very smart child, and we like to give her the ability to feel in control by knowing what is going to be happening to her. Thanks for offering your perspective and your experience -- it is very much appreciated!

Thanks for the well wishes and the general information on sedation from your experience Paige. I'll be sure I get through to someone at the hospital or ambulatory surgery center, but wanted to also get some real life experience/information and figured this was a good venue.

Thanks!
Susan


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RE: vcug + renal us for 3 year old: seeking information (long)

Susan, I agree with Paige- there is no excuse for sloppy prelim contacts.

Find out who the scheduled anesthesiologist is- perhaps you can speak with him/her BEFORE the 'right before the procedure' meeting. There are different levels of sedation, and you want to be sure she has the lightest level possible to still perform the procedure. She will have fewer side effects, ie: vomiting, headache etc.

For procedures requiring sedation, I believe standard is nothing by mouth after midnight.

You know I'm not a doctor- but the above is from personal experience.

Put on your mom-armor in case you need it. Some medical personell have a one-size-fits-all approach to patients, which doesn't work well with a youngster. We have had only 1 bad experience, and I swear the nurse wanted to cold-cock me. DD2 was scheduled for ear tubes- she was 4, hungry and cold- the pre-op rooms were like ice. Even though I held her, she was miserable and cried. She couldn't keep her lips around the thermometer, and the nurse got upset with her, and told her if she didn't stop crying she (the nurse) would make her mother leave. Lovely.

Of course, I told her if I left, it would be with DD2 and she would have to answer to the otolaryngologist and the anesthesiologist for our no-show.

If you're not allowed to do something (be with her when she goes under, let her keep her blankie till she's out, etc.) ask if it compromises her health, the procedure, hospital rules, (remember dads can be in the delivery room- why can't moms be with a child until she goes under?)

However, don't ask if you can stay during the procedure. You can't, and it's upsetting seeing your child unconscious- the doctors don't want to deal with worried mommies when they have a job to do.

Bless your heart, this will be harder on you, Susan, than it will be on your little one. Your intuition is leading you in the right direction- get some answers from accountable parties before you proceed. Let us know how it went Thursday PM and we'll all sit down to a virtual glass of wine.


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RE: vcug + renal us for 3 year old: seeking information (long)

Lots of info online - check out the link below, it's from a children's hospital and is a brochure titled "My child is having a VCUG".

I think I had something like that a while back, except I got an injection of the of the catheter it looks like they use on kids. For the ultrasound, I started pounding the water about 45 minutes prior to the procedure. That was almost a little too soon, as I was bursting by the time they actually did it. Anyway, I'd time the liquid intake to begin heavily about 30-40 minutes prior to your ETA. By ETA I mean when you expect they'll actually be doing the procedure, not your appointment time.

The VCUG wasn't a big deal for me as an adult. They shot something into me that gave me hot flashes, which was the most uncomfortable part. After that I was just laying on a table while the xray machine circled me and did its thing.

I can see how the whole hospital and procedure experience would be very, very scary for a child. Definitely bring the blankie and some stuffed animals, and candy for when it's all over, and try to stay by her side as much as possible.

Here is a link that might be useful: VCUG for children


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RE: vcug + renal us for 3 year old: seeking information (long)

Thank you all.

Cheifneil, I had seen that brochure back when this first came up in November but had forgotten about it -- thank you for the link!

It's amazing how much information there is available to us these days through a few quick keystrokes. It's also helpful to get the personal points of view of people I've come to know as friends.

Pecanpie -- Thanks for the reminder that we must sometimes be stubborn and downright aggressive when it comes to making sure our children are treated with dignity and respect. And as children. We've found that with our 2, knowledge is power, and I can't tell you how frustrating it is to have to beg for information to help our children understand scary procedures. I actually had a nurse say, "You don't honestly think he understands what you're saying do you?" when our then 17 month old was getting tubes put in his ears. We were stunned that she didn't think he would! Different perspectives. Anyway, she later told us that she'd never seen a child so interested in what was going on and that for his age, he had more vocabulary about it than she'd seen in kids 5-6 years old. She also said he was the most calm and cooperative child she'd seen -- who wasn't unconcious. He even gave the surgical nurse a kiss on the cheek as we handed him to her to take him into surgery!

An update: I was able to speak to different radiology department person who also clarified some things with the nurse who performs the procedures. MUCH more knowledgable. Oral Versed to be given, no general anesthesia or IV. No need for drinking gallons of water ahead of time, and we can one or both be there, as can blankie. I feel MUCH better now.

Susan


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RE: vcug + renal us for 3 year old: seeking information (long)

Ah, good :)


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RE: vcug + renal us for 3 year old: seeking information (long)

Oh, great news! I'm glad it is all working out well. As someone with chronic kidney problems, I sympathize, too.


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RE: vcug + renal us for 3 year old: seeking information (long)

Update: I'm still a little agitated after yesterday's experience and trying to figure out how I feel about the way things went, so forgive me if I ramble a little, and vent a bit. But, first of all -- everything's fine. My daughter's tests showed perfectly normal kidney/bladder function; that's a big relief.

The ultrasound went well-no problems there. However. When the office staff went to send back the orders for the VCUG, they found that the ped's office had sent the script without sedation. Not what we, including our daughter, were prepared for. They could not get through to the doctor's office (8:30am), and the voice mailbox was full. Great. I got out my cellphone and hit the lobby...within 20 minutes (mostly spent on hold), I had the office staff faxing the correct prescription. In fact, by the time I got back to the Radiology waiting room, I was getting the thumbs up from the office staff. Good.

Then, once in the room, the "intervention" nurses talked us out of sedation. I believe at first they thought she was going under general anesthesia, but even when told it was oral Versed, she persisted in trying to persuade us that the risks were not worth the benefits -- that the catheter would be easily done and that the testing would be simple. Ok, fine. We're all for less risk.

However, the catheritization was not simple. Not pain free. Not un-traumatic. It took 4 nurses/techs to hold her down and get the catheter in (after 3 tries), and this is with DH and I at her head talking to her and holding her arms. NOONE, and I mean NOONE prepared us or her for the fact that she was going to be asked to pee on the table. She's 3. She's recently potty-trained. She doesn't pee on the table. Meanwhile, the Radiologist is being a screaming cheerleader, which is pumping up her anxiety level and he WON'T SHUT UP.

Egads. It was really quite the experience. I'd probably feel really differently if we'd found out something was really wrong, and I know I'd feel differently if we'd done sedation and something had gone terribly wrong, but man...I just am so torn about the process. I'm so pissed that they didn't give us all the information we needed BEFOREHAND, despite my persistant and detailed questioning. It's the things you don't anticipate that get you.

We've tried to use the experience to continue teaching the ever so important lesson that it's ok to object to people doing things to your genitals that you don't like. That it's ok to say no. That it's ok to scream and yell and put up a fuss if someone is trying to hurt you, all the while reinforcing that this was a necessary medical procedure. Such a fine balance. She was so offended, and so hurt that we didn't do more to protect and defend her. Breaks my heart.

So. That's the update.

Susan


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RE: vcug + renal us for 3 year old: seeking information (long)

Ah, man...I hate it when I forget to say Thank You. I meant to say thanks for all of the support -- spoken and unspoken! It really means alot.

I'm just still perturbed. No reason to be impolite, though! My apologies.

Susan


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RE: vcug + renal us for 3 year old: seeking information (long)

Oh Susan, how awful what you and DH and DD went through. Yes, the study came out ewell, but the process was so unnecessarily traumatic. I am so sorry you all were subjected to that.

But happy over the results. I had had it in the back of my mind since December that your DD was to have this done around this time and was wondering....

Sleep well.


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RE: vcug + renal us for 3 year old: seeking information (long)

Oh, Susan, I'm so sorry. You must have been at your wits end.

I'm so glad the test came back normal. But I understand the feeling of futility in putting your child through a procedure for what turns out to be a negative result. Been there, done that.

And to be candid, I simply cannot believe those nurses strongarmed/guilted you out of sedation. As a mother, you're in a vulnerable position and we like to think that we can trust what the health care professionals tell us. This is an example of how the system does not always work. I'm so sorry it had to be at your family's expense. Hugs and lots of comfort to you and dd.


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RE: vcug + renal us for 3 year old: seeking information (long)

Oh Susan, I'm so sorry! My twins turn 3 in a few weeks and I can only imagine how traumatic that experience would be for a child that age, not to mention for her parents! How utterly, utterly ridiculous that this staff, obviously lacking in pediatric skills, should have made so many negative decisions with your daughter's procedure. I would certainly let your pediatrician know how very unhappy you were.

I am SO glad to hear that everything checked out just fine, however. But you know what gets me? This: "she persisted in trying to persuade us that the risks were not worth the benefits" in reference to oral sedation. This seems an ironic statement from a team that is about to perform a *procedure* that might arguably fall into that category.


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RE: vcug + renal us for 3 year old: seeking information (long)

Susan, after you have calmed down but while you're still riled up enough to be forceful, perhaps you can make a call to the hospital director inquiring how to file a complaint. Whether you do or not may be irrelevant, but you'd be doing another child and parent a big favor by making some higher-up aware that you were mighty unhappy with the (unsolicited?) advice you were given to ignore your pediatrician's recommendation.

I'm so sorry your family has been through this. IMO, you all deserve an apology.


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RE: vcug + renal us for 3 year old: seeking information (long)

Susan - sorry I didn't see this thread earlier in the week, things have been crazy. I'm glad everything worked out ok, but really sorry you had to go through this. My heart goes out to your DD, though I'm sure she's probably already gotten over it.

I agree with others that it is worth complaining about the advance information situation. When my DS had surgery at 2 1/2 at a premier children's hospital, we were given pages of information on what to expect, as well as a number to call every time. Even so, it was a difficult experience. I can only imagine how much worse it would have been without full information. I'm sure you just want to get this behind you, but their behavior was really inexcusable.
E.


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RE: vcug + renal us for 3 year old: seeking information (long)

My son had a urinary infection at about age 18 months, rather unusual for a boy...he had a renal sonogram, which was an easy procedure really. Then he had another test, like your DD, where they really need to see how, under x-ray, how the child's bladder empties, to see if any residual urine remains in the bladder and examine radiologically all the sturctures for normal or abnormal function...I can't really remember all the details as it was quite a few years ago. I do remember holding my child down, as any toddler or young child would scream if catherized and restrained and uncomfortable. I remember it not being a nice or pleasant experience, but necessary. In your situation, it seems like communication about what to expect was missing all along the way. I imagine what happens with a 3 year old, especially a little girl, it that when she goes to the bathroom independently, there is a good chance that she is not able to wipe properly and with the female urethra being so short, it's easy to get an ecoli urinary tract infection....I might write a calm, but firm letter to the hospital administrator outlining the poor communication all along the way, and I'd ask for a response, which you would probably get anyway. Sorry you had such a lousy experience.


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RE: vcug + renal us for 3 year old: seeking information (long)

What an awful and heart-wrenching experience!! I think the "professionals" handled it horribly and would be very tempted to write a well-thought-out and calm letter if I were you. It seems so unnecessary for it to have been so traumatic!!! :( I think YOU handled it beautifully and your children are very fortunate to have such good parents.


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RE: vcug + renal us for 3 year old: seeking information (long)

Oh GoD, My heart breaks for you daughter. I had to watch my 9 month old 34 weeker go through the VCUG and Renal ultrasound. My poor baby was screaming and looking at me like I was betraying her. Her test were perfectly normal too. My ped wanted her to have it since she had 2 uti's in 9 months. She is 2 now so obviously no permanent damage except my memory of it.


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RE: vcug + renal us for 3 year old: seeking information (long)

Thanks so much for the ongoing support and consolation. I'm still gritting my teeth over it, but want to wait until my thoughts are coherent before writing anything down or calling anyone about it. I know my daughter will get over it long before I will, but she was all quivery-lipped and teary-eyed over dinner while recounting the experience for her brother (all of 4 years old), so that's pretty telling on how long it will be for me. !!

I wish I was feeling more fluent about the whole thing. I feel like I'm sputtering out my emotions in bursts, without ever really getting across the true feeling. Don't want to try to write a letter, much less speak to someone until I get it all sorted out. But when might that happen? Right about the time I've lost the anger, probably. Ah, well...I'll just sleep (toss & turn) on it again tonight.

I do appreciate all the kind words and the virtual support!
Susan


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RE: vcug + renal us for 3 year old: seeking information (long)

Susan, write the letter while you are angry. Then sit on it. Read it again in a couple of days, then a couple of days after that, but don't send it immediately. When you are cooled off enough to be objective, take it out and edit it. Then send it, explaining your delay.

The immediacy of the situation and your attending anger are very important to your complaint. You will write down information that needs to be conveyed. The delay time will allow you to edit out the 'accusatory' and inflammatory (and rightly so!) feelings you have right now into more fluent and attention-getting statements of fact. Don't hesitate to ask the hospital or department head, "Tell me why our experience at your hospital was so negative."


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RE: vcug + renal us for 3 year old: seeking information (long)

Good advice, Pecanpie.


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RE: vcug + renal us for 3 year old: seeking information (long)

Yes, I think Pecanpie is right on the money. I get furious just HEARING about what you all went through!


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RE: vcug + renal us for 3 year old: seeking information (long)

Excellent advice, pecan. Oh (((((GofD))))), how horrible for both of you. If misery can be helped by company, I do know how you feel; my daughter had had such bad experiences with unnecessary procedures in her first year of life that when she saw her father walking toward her from a distance in a white shirt and tie one day (what her ped. gastroenterologist always wore), she started screaming with fear :(. She also had a specific experience, more similar to your daughter's, with jawdroppingly, breathtakingly, actually protocol-breaking (I learned later) unfeeling nurses & radiologist before she was 4. I know you will see her little eyes looking at you...but there is time to explain the choice you thought you were making and to narrate it including your own anger and your standing up for her, too. And I also think to myself how much *worse* could have happened if, say, we didn't speak English as our first language, if I didn't feel empowered enough to assert my right to be in the room with her...empowerment is crucial. Who knows, maybe she'll grow up to be a ped, or a researcher, or a nurse, in order to make sure that the kids she comes into contact with *won't* have to go through what she did in order to get appropriate treatment.

She'll grow up with a healthy awareness of the fallibility and sometimes officiousness of the healthcare system, enough to be a self-defending consumer, which is crucial in these times. (Isn't it sad how the word for the folks on the receiving end of medical intervention are now called "consumers" rather than "patients"? I'm sure my dear mother, a deeply dedicated maternal and child health pediatrician, spins regularly in her urn.)

Do complain, and let your daughter know you're doing it. Do it even when you're cooled off, for all the less empowered "consumers" who don't speak English and who are subjected to that and worse every day. Force a bit of respect for "just moms" into the professionals' awareness, if for only a moment. And give your little girl a gentle hug from me...


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RE: vcug + renal us for 3 year old: seeking information (long)

pecan, that was great advice and I wholeheartedly agree.

flyleft, that was a beautiful post. Also, thanks so much for pointing out how we can help effect change in a system that can sometimes lose touch with the nurturing side of medical care.


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RE: vcug + renal us for 3 year old: seeking information (long)

Well said, flyleft and seekingadvice!!!!

Flyleft, your post brought tears to my eyes. So true.


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RE: vcug + renal us for 3 year old: seeking information (long)

Flyleft contributed the most important advice yet- complain and LET YOUR DAUGHTER KNOW YOU'RE DOING IT. Your DD needs to know that you are doing everything you can for her, in every way.

Susan, your DD is only 3, but what do you think about asking her if she wants to draw a picture about how she felt or if she wants you to write down what SHE'D like to say to the hospital director? Even if you didn't send it, she might like to have a 'say', and it could be an unexpectly powerful addition to your complaint.


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RE: vcug + renal us for 3 year old: seeking information (long)

My just turned three year old dd is going to have to do the ultra sound and the VCUG. I had reflux from age 2 to age 10 and outgrew just before surgery was going to be ordered. I had the VCUG procedure done no less than five times WITHOUT sedation. At age 35, I am still traumatized and would choose child birth over the procedure any moment of any day. I INSIST that my dd has sedation and I think that the nurses that guilted you out of it are no less than monsters for doing so. Our pediatrician wants sedation, which surprised me as I thought I was going to have to sell her on it, but she insists as well. It is like an ancient torture method without, believe me. I am soooo sorry it happened that way for you and for your daughter. We all do the best we can and as parents, of course we don't want to risk our children. However, oral sedation is not as dangerous as IV/general anasthesia and I don't think they must have even had good motives in scaring you out of it.


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