Oh my goodness I can't believe that I finally became enough of a squeaky wheel with Apria that we are "supposed" to be FINALLY getting the buttons for my daughter. After 2 months of fighting with them and 5 or 6 calls with various people yesterday alone. Well, I got a call from the head east coast regional customer service manager this morning letting me know they found us 2 AMT Mini One balloon buttons for her and they are over nighting them to the house due to arrive in the morning.
Not only did they get a call from our peds dr, the GI dr, our insurance case manager, but also they were contacted by AMT as well concerning the fact that we have not gotten the buttons we are approved for and over due for getting. She let me know that will not happen again and they confused how they were contacted by an AMT rep concerning my daughter.
LOL this was a fun one to explain and I got to tell her about our Mini Buddy program!!!
Well in the end they are giving us one of the buttons free of charge and not charging the insurance. She assured us that this will not happen again. I am just hoping that her buttons do indeed arrive tomorrow as they told me they would... If not they will have a very upset momma to deal with...
Thursday, March 22, 2012
missing school again
Poor Ellie is home again and back on Pedialyte getting another clean out today. At least this time it is working faster because we have been using the Miralax daily but the poor child has been missing to much school for her GI issues.
Yesterday at school we had to turn off the pump again due to her formula not being digested and it all being pushed through the clamp and into her farrel bag. Part the formula was undigested and part was partly digested. She so happy for the last 2 1/2 hours of school to be free of her pump and totally disconnected. We let her stay off the pump until dinner time and hooked her up to the Pedialyte mixed with Miralax at that point. This morning is when she had a major blowout which means things are moving through her faster this time. If all goes well she hopefully will be able to return to school tomorrow or only miss 2 days of school this time.
Yesterday at school we had to turn off the pump again due to her formula not being digested and it all being pushed through the clamp and into her farrel bag. Part the formula was undigested and part was partly digested. She so happy for the last 2 1/2 hours of school to be free of her pump and totally disconnected. We let her stay off the pump until dinner time and hooked her up to the Pedialyte mixed with Miralax at that point. This morning is when she had a major blowout which means things are moving through her faster this time. If all goes well she hopefully will be able to return to school tomorrow or only miss 2 days of school this time.
Mini Buddy Organization
I am SO excited to be part of an amazing organization that puts families and children first. Our family has had SO fun participating with the Mini Buddy™ organization over the last couple months even though we have just recently hit the internet officially this past week. So who and what is Mini Buddy™ and what makes this organization unique?
Mini Buddy™ is a group organized by families with children who have feeding tubes as their primary source of nutrition. Our goal is to help families and children understand the transition from eating by mouth to eating through the tube. The Mini Buddy™ has comforted many children facing procedures and surgeries. We are excited to work with multiple Children’s hospitals across the country to provide stuffed animals with feeding tubes to as many children as possible, preferably before surgery.
This is important to us because when dreams are shared, and a community comes together, anything is possible!
Our primary goal is to make the transition from oral to tube feeds less scary for children. We hope to use our Mini Buddy™, a very special animal with a feeding tube just like the child's, to provide comfort as well as a teaching tool that can be used to help family, friends and caregivers learn about feeding tubes.
We also hope to bring these children and their families together by working with individual hospitals to set up local chapters that include a support group for families dealing with GI issues. In our local area in Maryland in the Upper Chesapeake Bay area, (APG area) we bring families with medical and special needs together and offer the support needed for these unique families.
We are very pleased to announce that we're working with AMT (Applied Medical Technology) and we are so excited to be accepting applications for Mini buddy’s™ now!
Also, if your child has received an AMT bear from another group, we'd love to have you share your photos with us too! Thank you!! ♥
To see more about who we are, what we are about, and why we do what we do please see our Facebook page at
http://www.facebook.com/pages/Mini-Buddy/271132522962766
Sponsoring a Smile
http://www.facebook.com/media/set/?set=a.279753235434028.67198.271132522962766&type=3
The inspiration behind why do what we do!
http://www.facebook.com/media/set/?set=a.271334892942529.65241.271132522962766&type=3
Behind the scenes and Build A Bear Parties
http://www.facebook.com/media/set/?set=a.271336802942338.65243.271132522962766&type=3
The Mini Buddy™ Adventures
http://www.facebook.com/media/set/?set=a.271373289605356.65254.271132522962766&type=3
The Mini Buddy™ Blog!
http://mini-buddy.blogspot.com/
Mini Buddy Wish List Items
Expired Feeding Tubes
Foley Catheters
NG Tubes
Picc Lines
CVL Hickman line
Central Lines
Ports
Trachs
20cc/ml Syringes
60cc/ml Syringes
Diabetic catheters
G-tube pads
Any other medical supplies that can be securely attached to a Mini Buddy friend.
Please remember these items can be expired or defective but need to be new for our Mini Buddy™ friends as many of our children have immune system issues. If you or your child have extra supplies you are willing to donate supplies, will gladly accept any supplies you can spare.
Please send your extra supplies (and applications) to:
Mini Buddy
P.O. Box 642
Parma, ID 83660
Another way you can help is if you've ever considered donating money, or possibly a gift card to Build-A-Bear, now's a good time to do it. $20, combined with their $10 off of a $30 purchase, will purchase enough animals for 3 children!!!
We also take all the valid Build A Bear coupons we can get a hold of.
Build-A-Bear e-cards can be purchased and sent to myminibuddy@gmail.com. Paypal donations can also be sent to this same email address.
At last count we have than 50 on our wait list!!
You can contact us at with any questions to or to request an application for your child at myminibuddy@gmail.com
Mini Buddy™ is a group organized by families with children who have feeding tubes as their primary source of nutrition. Our goal is to help families and children understand the transition from eating by mouth to eating through the tube. The Mini Buddy™ has comforted many children facing procedures and surgeries. We are excited to work with multiple Children’s hospitals across the country to provide stuffed animals with feeding tubes to as many children as possible, preferably before surgery.
This is important to us because when dreams are shared, and a community comes together, anything is possible!
Our primary goal is to make the transition from oral to tube feeds less scary for children. We hope to use our Mini Buddy™, a very special animal with a feeding tube just like the child's, to provide comfort as well as a teaching tool that can be used to help family, friends and caregivers learn about feeding tubes.
We also hope to bring these children and their families together by working with individual hospitals to set up local chapters that include a support group for families dealing with GI issues. In our local area in Maryland in the Upper Chesapeake Bay area, (APG area) we bring families with medical and special needs together and offer the support needed for these unique families.
We are very pleased to announce that we're working with AMT (Applied Medical Technology) and we are so excited to be accepting applications for Mini buddy’s™ now!
Also, if your child has received an AMT bear from another group, we'd love to have you share your photos with us too! Thank you!! ♥
To see more about who we are, what we are about, and why we do what we do please see our Facebook page at
http://www.facebook.com/pages/Mini-Buddy/271132522962766
Sponsoring a Smile
http://www.facebook.com/media/set/?set=a.279753235434028.67198.271132522962766&type=3
The inspiration behind why do what we do!
http://www.facebook.com/media/set/?set=a.271334892942529.65241.271132522962766&type=3
Behind the scenes and Build A Bear Parties
http://www.facebook.com/media/set/?set=a.271336802942338.65243.271132522962766&type=3
The Mini Buddy™ Adventures
http://www.facebook.com/media/set/?set=a.271373289605356.65254.271132522962766&type=3
The Mini Buddy™ Blog!
http://mini-buddy.blogspot.com/
Mini Buddy Wish List Items
Expired Feeding Tubes
Foley Catheters
NG Tubes
Picc Lines
CVL Hickman line
Central Lines
Ports
Trachs
20cc/ml Syringes
60cc/ml Syringes
Diabetic catheters
G-tube pads
Any other medical supplies that can be securely attached to a Mini Buddy friend.
Please remember these items can be expired or defective but need to be new for our Mini Buddy™ friends as many of our children have immune system issues. If you or your child have extra supplies you are willing to donate supplies, will gladly accept any supplies you can spare.
Please send your extra supplies (and applications) to:
Mini Buddy
P.O. Box 642
Parma, ID 83660
Another way you can help is if you've ever considered donating money, or possibly a gift card to Build-A-Bear, now's a good time to do it. $20, combined with their $10 off of a $30 purchase, will purchase enough animals for 3 children!!!
We also take all the valid Build A Bear coupons we can get a hold of.
Build-A-Bear e-cards can be purchased and sent to myminibuddy@gmail.com. Paypal donations can also be sent to this same email address.
At last count we have than 50 on our wait list!!
You can contact us at with any questions to or to request an application for your child at myminibuddy@gmail.com
Wednesday, March 21, 2012
frustrating day...
Well today has not gone as planned at all...
We got a call from the Apria dietitian asking how Ellie was doing. Well I asked her to check into our AMT Mini One button situation. Well after checking she came back and told me there were no buttons in stock and there was no ETA on when we would get a button. Right now my big concern is Ellie is prone to MRSA, strep, and staff infections and has surgery in 2 weeks. Having surgery and a strep infection is treatable. However, staff or MRSA and surgery is a VERY VERY bad combination.
Her stoma site is currently becoming very tender, inflamed, and red. This is very concerning because we are now 6 weeks in the same button and she is approved for monthly button changes to prevent serious infections. UGH!!!
So during Corbyn's apt to check his platelet levels (at 23k right now) I talked with the peds team about this. Not happy about this I was sent over to TriCare. Again not happy about the situation I was told to start looking for a new DME. Why? Well because Ellie is still using the same button she had when she had a MRSA infection and a mild staff infection. This did not set well with the peds team, TriCare, or John Hopkins. Everyone told me she "should" have been sent a replacement button (um DUH!!).
That is what I have been TRYING (over and over) to tell Apria... Unable to get online to find a DME, unable to get a hold of our case manager for Corbyn and Ellie I hopped online and found the 1-888 number for our insurance, explained the situation and told the person I had no clue who I needed to talk to but needed help ASAP. I told her I have tried to resolve our issue through Apria, worked with the DME, contacted AMT, worked with our peds team, worked with the GI team and still had no resolution and needed help at the insurance level.
At this point I was transferred to another department, some expedited something or the other department. Again described the situation, what steps I have taken to try and resolve the issue and was told I have tried everything. At this point I was told that she is indeed approved for the buttons, approved for monthly changes and there is NO reason for Apria to not be delivering us our buttons.
Ellie has been approved as of this afternoon for expedited authorization of DME change. Within 36 hours we have been approved for her to be switched to the John Hopkins Home Health Care Services Team!!!! Even better is the fact that they do have the AMT Mini One 1.7 Balloon Button in stock and can have it delivered as soon as they have the insurance approval and peds script for the DME supplies.
I have emailed the peds team the full list of DME supplies (Thank you Nana for helping me get the medical provider notebook completed).
Today I have literally had to charge my phone 2x now due to phone calls and trying to get the her buttons located and delivered. The buttons she so desperately needs like 2 months ago... I can't wait to say good by to Apria...
We got a call from the Apria dietitian asking how Ellie was doing. Well I asked her to check into our AMT Mini One button situation. Well after checking she came back and told me there were no buttons in stock and there was no ETA on when we would get a button. Right now my big concern is Ellie is prone to MRSA, strep, and staff infections and has surgery in 2 weeks. Having surgery and a strep infection is treatable. However, staff or MRSA and surgery is a VERY VERY bad combination.
Her stoma site is currently becoming very tender, inflamed, and red. This is very concerning because we are now 6 weeks in the same button and she is approved for monthly button changes to prevent serious infections. UGH!!!
So during Corbyn's apt to check his platelet levels (at 23k right now) I talked with the peds team about this. Not happy about this I was sent over to TriCare. Again not happy about the situation I was told to start looking for a new DME. Why? Well because Ellie is still using the same button she had when she had a MRSA infection and a mild staff infection. This did not set well with the peds team, TriCare, or John Hopkins. Everyone told me she "should" have been sent a replacement button (um DUH!!).
That is what I have been TRYING (over and over) to tell Apria... Unable to get online to find a DME, unable to get a hold of our case manager for Corbyn and Ellie I hopped online and found the 1-888 number for our insurance, explained the situation and told the person I had no clue who I needed to talk to but needed help ASAP. I told her I have tried to resolve our issue through Apria, worked with the DME, contacted AMT, worked with our peds team, worked with the GI team and still had no resolution and needed help at the insurance level.
At this point I was transferred to another department, some expedited something or the other department. Again described the situation, what steps I have taken to try and resolve the issue and was told I have tried everything. At this point I was told that she is indeed approved for the buttons, approved for monthly changes and there is NO reason for Apria to not be delivering us our buttons.
Ellie has been approved as of this afternoon for expedited authorization of DME change. Within 36 hours we have been approved for her to be switched to the John Hopkins Home Health Care Services Team!!!! Even better is the fact that they do have the AMT Mini One 1.7 Balloon Button in stock and can have it delivered as soon as they have the insurance approval and peds script for the DME supplies.
I have emailed the peds team the full list of DME supplies (Thank you Nana for helping me get the medical provider notebook completed).
Today I have literally had to charge my phone 2x now due to phone calls and trying to get the her buttons located and delivered. The buttons she so desperately needs like 2 months ago... I can't wait to say good by to Apria...
Tuesday, March 20, 2012
Ellie and her funny comments
Ellie and her funny comments:
This morning after getting a shot today she was asking for marshmallows (her MOST favorite treat that was taken away from her) and I caved and told her 3 (mini-mellows) if she was brave and did not fight the shot.
Well after the shot she was asking about the marshmallows then asked "oh no mom will we get in trouble with my dr for me eating them?" I let her know she should be ok. Then reminded her right now she is getting some foods the dr's know are bothering her before her surgery for better test results.
The lab was commented that the dr would not be upset but the dentist would and Ellie told them "but you do not know my dr's" Confused I simply let them know the dr's suspect she has Eosinophilic Esophagitis. (she is HIGHLY suspected of this)
ROFL just pronouncing the EE tongue twister and having her giggle and say eosinophilic, was funny. She giggled harder saying "I KNOW you can't say what I just said!"
This morning after getting a shot today she was asking for marshmallows (her MOST favorite treat that was taken away from her) and I caved and told her 3 (mini-mellows) if she was brave and did not fight the shot.
Well after the shot she was asking about the marshmallows then asked "oh no mom will we get in trouble with my dr for me eating them?" I let her know she should be ok. Then reminded her right now she is getting some foods the dr's know are bothering her before her surgery for better test results.
The lab was commented that the dr would not be upset but the dentist would and Ellie told them "but you do not know my dr's" Confused I simply let them know the dr's suspect she has Eosinophilic Esophagitis. (she is HIGHLY suspected of this)
ROFL just pronouncing the EE tongue twister and having her giggle and say eosinophilic, was funny. She giggled harder saying "I KNOW you can't say what I just said!"
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