Monday, May 21, 2012

The trials and tribulations

We have to empty Anna's bladder for her at least 5 times a day.  This is normal operating procedure for someone with spina bifida.  If we don't, she's at risk for a bladder or kidney infection, which would not be good.  Obviously.  We order cath kits from a medical supply company, Byram Healthcare, once a month and they are usually delivered via UPS in two large boxes.

I'm not a fan of Byram after they claimed that the cath kits were back ordered last year and had us scrambling around to find an alternative.  It's not like we were ordering cotton balls or a blender.  Imagine if they supplied you with oxygen tanks.  Sorry, those are on back order right now. We tried to change suppliers but our health insurance at the time basically said no.

Having a child with medical needs sometimes leaves me feeling like I'm on an island.

We received our two boxes a few weeks ago and one night, Rich opened one of the boxes and pulled out a kit in order to cath Anna.  The mat was solid blue instead of white with blue and red teddy bears on it.  "They must have changed the mats."  And then Rich picked up the catheter.  It was clearly the wrong size.  Size 14 instead of size 8.

There were about five size 14 kits on top and the remainder were the correct size.  I went into freak out mode and told Rich that we needed to open and inspect the second box.  How does this happen?  Meanwhile, kids are running around us like wild animals.  Rich doesn't like when I go into freak out mode and wanted to get the girls into bed.  I dropped it and long story short, by the time we opened that second box, our supply was low and the second box contained only two kits in the size we need.  TWO.

I was about to rip someone's head off.

That happened last Wednesday night.  Rich called Byram on Thursday.  Their response to how this could have happened was, "I dunno.  Human error?"  They promised to ship out another box of supplies that very day and they did follow through on that promise.  But when we checked the tracking on Saturday, we discovered that they had shipped the box the slowest way possible and we won't receive the box until Tuesday by the end of the day, which means the end of the day because they are always dropped off at the end of the day.


Even more awesome was the fact that we were super low on cath kits.  Rich tried calling Byram but they don't answer the phone on the weekend.  So instead of cathing Anna 5 times on Saturday, I cathed her 4 times.  We were down to 3 caths on Sunday.  Rich had left a message with Anna's urology nurse and she called us back last night.  Sunday night!  She had a few sample kits in the correct size at the hospital so I walked down to MGH this morning and picked those up.  Otherwise, we would have had one cath kit for tomorrow.

What if the new shipment doesn't show up or contains the wrong size again?

This is stress I don't need.

I was so worked up over this. It was making me ill.  The good thing about Anna is that she still does pee on her own even though she is not supposed to.  She just can't feel it so you can't count on it happening.  I made sure to check her for wet pull-ups when we had to limit how many times we cathed her and she was peeing on her own.  Thank God.  There are times between cathing when her bladder is full and doesn't empty and she will ask us to cath her.  I was almost crying at the thought of this happening and not having the supplies to do so.

It gets even better.  Byram sent us a return shipping label for the incorrect size cath kits.  That arrived before the new kits.  AND it appears that our new health insurance only covers 90% of the cost of the kits, so we received a bill for just over $100.  Seriously?  You want us to pay for cath kits we haven't even received yet.

Now Rich is about to rip someone's head off.

Lesson learned:
  1. Byram sucks.
  2. We need to check the supplies before the UPS truck pulls out of the driveway.
  3. Pediatric Urology at MGH is fantastic.  (We already knew this.)
  4. And Byram sucks. (We already knew this.)
With the help of MGH, we have started the process (again) of trying to change medical supply companies.  

Anna can tell the difference between these two cath kits.  Maybe she should work for Byram.



Okay, last time.  Only 2 days of torture left!


Wendy said...

That sounds so incredibly frustrating. I'm so sorry they messed up the shipment and then sent the new box the slowest way possible. That's just unacceptable.

Jessica Anne said...

My husband (and some of his friends) are in wheelchairs so I know all about the catheter situations. To make a long story short, we ended up running around Las Vegas while we were on vacation to find a very specialized catheter for our friend that were like $10 each! I can totally sympathize with your situation. I hope you get the go ahead to change companies!

Siné said...

My heart goes out to you. My daughter receives her formula via a medical supply company, and I was panicking last week as her food supply was starting to dwindle and the next shipment had yet to arrive. It's nerve-racking, that's for sure. I hope you will be able to switch supply companies without too much of a hassle.

Just the Tip said...

Seriously..again!!! I was just thinking how lucky we have been with our company. We have size 10's Do you think that's too big for Peyton? (she's 2 1/2)

We have quite a few extra boxes..if you want to figure out how much shipping would be I could send you guys a box so you have an extra (we have the kits too--if she could use the 10)

Our supplier is 180 medical, they have been awesome, COMPLETELY AWESOME. I cannot say enough good things about them. They even send hand written cards in the mail.

We had to pay 20% and our copay was over $100 and we only get 120 at a time. The kits are..expensive! To say the least. You may want to check and see if they have a financial assistance program (never hurts to check I know your H isn't working) And also maybe look into the medicaid waivers in your state. Anna would probably auto qualify and it's based on her income and would give her straight medicaid as secondary.

I am so mad for you guys!!

Lesley said...

I freak out also when something my daughter needs to have to survive is delayed. For us, it's liquid glycerin suppositories. Without these, she cannot poop. Cannot do it. And if she doesnt get 2 suppositories a day she then doesn't eat. Like right on that day,no food intake, cause she feels full. Grrrrrr.
So I freak out. panic. I then go to the 'what if they stop making these?' mode too. Cause my girl would probably die. Yup, sounds dramatic, but it is what it is.
I totally understand your pain.

Farah said...

I am so sorry! I work for UroMed, a medical supply company of you're looking for a new provider. You and Rich are doing a great job, keep your head up! Things will work out.

Jessica said...

So much unneeded stress. Companies, obviously medical included, need to realize that customer satisfaction depends on the type of service they provide. I hope the rest of your week isn't like this.

Carolyn Wright said...

Reading this post made me soooo mad! My husband needs something similar, it is something you CAN NOT run out of, there are no other options if you don't have the supplies you need. We have used so many Medical Supply Companies, it isn't even funny. They all SUCK! And insurance is awful for coverage. We have good insurance too! After living in Indianapolis for 10 years we have finally found an actual pharmacy that sells them. Maybe you can find something similar where you live? Our back up plan is to go to an ER for supplies if it got to dire straights. I feel for ya. I get all Mama Bear when my hubby needs stuff and isn't getting it. I can't imagine if one of my girls was in that spot.

P.S. Our local pharmacy is called Tucker Pharmacy and it is a Walgreens actually.


Sarah said...

Just the tip - THANK you so much for your offer!! We rec'd our supply yesterday and it was correct - Thank God! Our nurse mentioned 180 Medical. She wasn't too familiar with them but a rep had just been in to visit with her. I would try an 8 on Peyton. The nurse mentioned moving down to a 6 for Anna. She said that she has a 7 year old who uses a 6. I'm not sure how we ended up with the 8.

Farah - We tried to switch to Uromed last year. We are trying again w/ different insurance. Our experience thus far (this year and last) has been great.

Sarah said...
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Jaclyn Armstrong said...

How incredibly awful. As an RN in a large hospital I get so frustrated when I can't find the supplies I need that should be stocked on our floor and have to search other areas of the hospital for what I need. But at the end of the day I can usually find it somewhere. And although I care deeply for my patients, they are NOT my children and I don't have to deal with the emotional stresses 24 hrs a day/7 days a week. I can't imagine what you go through. I hope you know how brave you are, and how inspiring to others! And your girls are beautiful :)

Hope's Mama said...

So pissed on your behalf. This is so not good enough!

Kelse said...

People need to get their heads out of their butts and start caring for other people rather than just money. I am so sorry about your situation. You, your husband, and your precious daughter should not have to go through this.

MamaMeerkat said...

We used to use Byram and they were awful. Our urologist had to overnight us caths one time because of similar issues. We use UroMed now and they are great!