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realisticdreams
member
Sometimes I still feel like a deer in headlights! **long**
realisticdreams
member
I had to share this with you guys. P is 2 1/2 so for the past 2 years (holy cow!) we started our diagnosis journey. She is 2 years out from her CP diagnosis. Almost a year out from her cord release surgery. Last September was our first urodynamic study that was bad then we had another in February. So I guess the bladder stuff is 'fresher,' It's no secret I struggle with it, etc.
So, let me get to the story. Our cath supply company made a shipping error. I put our May box on top of our Feb box (I do skip MONTHS at a time on our order since we don't use nearly as many as we are supposed to be using). I was opening them to combine them because the boxes are really big and taking up a lot of our bedroom. So I opened a box, and the package caught my eye, everything was the same but they were 14fr. I immediately thought I had maybe been using those on her and that's why she has been screaming/bleeding. I ran to the car to check the ones we had taken with us to the pedi and luckily they were the right size. I called the company and they said they couldn't do anything bc the order was from over 30 days ago and they can't edit insurance.
Please dont' talk to me about insurance when it relates to billing drugs or supplies, i've been doing it for 10 years, I train people on how to do it. I'm aware of the laws. She also got snappy as to why I hadn't opened that box. We had 3 boxes at that time, I used a smaller box which was right and was in P's room and put those in our room. Then when May came I put those boxes on top and pulled from those. I told her we were having trouble with consistency if someone wasn't available to hold her down. So she told me to leave them out for UPS.
UPS never came. Two days later I called back she said, "I just spoke with my supervisor and we can't do anything about it." I told her that if we filled a drug wrong, regardless how many months ago it was WE would fix it. I reminded her that she billed the insurance for 10french, and so technically insurance didn't need to be edited. She said they aren't allowed to take back and redistribute product over 30 days old. Ah ha. I asked to speak to her 'supervisor.' She came back on the phone and said to trash them (gasp!) and they'd re-send the order. I told her regardless of rules, etc. An employee there signed off on them being 10's and they are obviously 14's that is THEIR mistake, not mine, not the insurances and THEY need to make it right. She finally agreed, but asked that I check every order ASAP now. Well uh yeah I will.
I know TOO MANY children who 10000% have to be cathed to urinate so that was fueling my anger behind this. This happens so often, that the wrong sizes are sent for children. Parents have to scramble to come up with enough to help their kid pee!
I tried to donate the cath's to all the free clinic's in town but no one could take them finally I was told to try a nursing home. So I called the one right down from us and the owner called me back.
(This is actually what the post was supposed to be about..i'm so sorry!!)
She said they could for sure use them and was so thankful I was offering. Then said, "your daughter has to use them?" and I said "yeah," She asked how old she was and I said "2 1/2" and she said, with such sincerity, "I'm so sorry." But the tone was that of someone that has a terminal illness. I mean I was kind of taken aback. I told her that it was OK but thank you. When I dropped them off the lady's daughter asked the same question and said THE SAME THING. In the same tone of voice.
In reality the cathing isn't that difficult. It takes 1-2 mins. It's Peyton's anxiety/pain/whatever the F is going on down there that makes it unbearable for us.
This really has no point except that I really felt super awkward at the tone of their sorry and how it was just..so..I'm having trouble even describing it.
Maybe the fact that it was a complete stranger who felt so sorry for us or maybe that they cath elderly, shouldn't they know it's no big deal?
Gah! Who knows. M has her repeat urodynamic study today so I'm sure i'll be posting later to find out if I'm the lucky mom of two "sorry's" lol.
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned
DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3
http://justthetipblogg.blogspot.com, The Neglected Blog.
This discussion has been closed.
Re: Sometimes I still feel like a deer in headlights! **long**
How frustrating that the cath supplier gave you such a hard time when it was their mistake.
As far as the 'I'm so sorry,' i wouldn't quite know how to respond to that either. She should have just thanked you for the supplies and left it at that. Undoubtedly, she was trying to be nice, but what an awkward thing to say. I know exactly the tone you described her saying it in. Blegh. Nobody wants to be pitied.
I feel sorry for the painful procedures our kids go through. We show them love and support, but never pity.
I'll be looking to see how the urodynamic study goes. You have two beautiful girls.
As a side note, do they prescribe anti-bladder spasm meds for the cath ing?
I'm so sorry you had to deal with all of that. I'm glad things at least got worked out. I agree about bladder spasm meds. Is that an option or necessary? Ds had two hypospadias surgeries and needed a catheter both times after. The first caused intense bladder spasms, but once he was on ditropan (spelling?), he was ok.
What a nightmare, I'm glad you realized the size difference. I've had pharmacys make mistakes before and now I alway check. Good luck today M!
I know! No local supply companies do pediatric catheters but our regular pharmacy stuff is now mandatory mail order, which REALLY irks me considering that's what I do!
And I had to giggle at the staying in character at home. I guess you are right, it was just kind of shocking to hear her talk like she literally has a terminal illness. I guess it is better than someone dismissing it as easy peasy. I'm never happy :-P
We never tell P that we are sorry, especially surrounding procedures. That was one of the first things we were told not to do. Different drs have different approaches when it comes to the medication aspect in conjunction with cathing.Our uro's approach is the less meds the better (which is mine, as well) BUT if we were to give P the medicine and not cath her it could be a medical emergency because they said she wouldn't be able to go on her own once we started those meds. For P's specific bladder problems she doesn't "need" the medications, per say.
Am I misunderstanding, or are you saying that the cathing itself caused him to have bladder spasms?
We haven't ever been told that before so it's interesting to hear. It isn't necessary for P's condition with cathing. I know ditropan is commonly used but our uro said P does not need it. We live in pretty humid weather and ditropan commonly causes problems with overheating. I will do some research though and look to see if it could indeed be helpful to her related pain with cathing. Thank you!
Sorry about the script being wrong. NOTHING nearly as important as your mistake, but our med supplier constantly gives us the wrong size syringes. The shipping form has the correct size, but voila, the actual product is wrong. I will say though, they have never given me grief and send someone out that day with the correct ones. If you ever run into a situation again where you need to gift away supplies, there is a medical supplies exchange page on facebook that is awesome!
As for the comment, people don't know what to say. I really think part of it is the same "shock" that we, as parents, went through. NOBODY wants to cath, gtube, trach, etc. their child, but we do it because it MUST be done. I think the comment is trying to convey that they are sorry you and your child have to go through that. It doesn't make it easy though--it always hits me with a reality check of just how different our life is in something that should be so fundamentally basic.
My son has needed to be cath'd for stretches of time after some procedures. We have to leave it in with a leg bag, though, because he is so difficult to cath. Every time we go home with the system, they give us anti bladder spasm meds. The nurse tells me to use them whenever he seems uncomfortable because, according to her bladder spasms are painful. He has a foley cath, so the spasms might be caused my the balloon pushing on the bladder instead of the placement and removal of the catheter. I hate to use medicines too liberally, too, but with younger ones who can't communicate how they're feeling it is so hard to tell if they are just uncomfortable, scared, or actually in pain.
hm. I know a foley is not an option for us because it would just further destroy what little bit of tone her bladder does have left. We want to do the intermittent cathing to simulate a normal urination without pressures having to rise before she voids.
I have asked about lidocaine but all of the dr's including our pediatrician is against it for long term use and use at all in pediatric patients. Maybe i should do some research to see what the deal with it really is. May I ask what caused your neurogenic bladder? Do you know anything about the side effects especially with pediatric patients? Our pedi just said it's not for internal use either. We got samples of 8's yesterday instead of 10's to see if that helps at all.
I hope things get better and easier for your family in regards to this. The lady surely meant to be supportive but I get what you mean. I would be put off if someone acted like my son's life was over bc of his asd.
I have interstitial cytitis (is that what you have?) I am soo lucky in that it rarely flares up except when i'm super stressed (haha).
I didn't know what the lo-fric caths were but it does look like they still make them.
I think it's the idea more than anything so regardless of what we use she is still going to have to be held down, etc.
I don't know much about lidocaine use in peds pts except for I know they've used it with DS but that was never long term. I'm not sure what the issue would be, I tried doing some research & I couldn't find anything adverse. It is such a small amount & I would just put a drop on a q-tip & apply it outside the urethra a few mins before cathing. The other thing that helps is making insertion as quick as possible, although with a screaming,thrashing toddler that is clearly near impossible.
I think that having a therapist or child life specialist work with her to develop some more understanding around what's going on would probably really help, too. We see an OT already but she has really helped DS to get through many painful medical procedures just by giving him a bit of "control" over the situation. You could probably just ask about having a child life specialist meet with you during your next appt, they have a lot of great info!
My neurogenic bladder was caused by a MRSA infection following a spinal surgery. I self-cathed for about a year & then had a Medtronic Interstim Device placed which has been AMAZING! For the first 6 mos I had to cath twice a day to empty completely but now it is very rare. I was one of the first to have this device & it was placed almost 10 yrs ago. I am just about coming up on needing to have the battery replaced but that's supposed to be easy. I can't imagine my life without it! My bladder was completely neurogenic, no matter how full it would get, my bladder just would not empty on its own. I ended up in the ER with 1800 cc in my bladder at one point!
I have no idea if they use the device in kids or not but it definitely would be something to look into when she's older. Most days I don't even remember I have it!