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!"
Wednesday, March 14, 2012
Mornings like this make my head spin...
OIY!! What a morning we had. 1st I get up at 5:15am (after a nearly sleepless night) to make sure I am up in plenty of time to get Celidah off to seminary in time, only to discover she was already gone and apparently had a ride but forgot to tell me.
I finally fell back asleep, then was awakened at 7:25 by a very frantic middle schooler who was ticked off that someone (mom hitting the wrong button oops) had turned off her alarm causing her to over sleep and miss her bus. Quickly we got her ready to go.
I gave Corbyn instructions on helping Ellie with getting dressed her neb started because I knew it would be a 15-20 drive to and from the school due to "rush hour" on coming base traffic. Knowing I would be back with about 15-20 minutes to finish Ellie's neb treatments, meds, get her feeding pump, bag and everything ready for school, this could be done with the time I knew I had. So I left with Jade to get her to school on time.
What I was NOT accounting for was that the trip to the school was a 7 minute drive, but getting back on base was a 25 minute drive (ack). Sitting there I see in one of the gate a random vehicle check and check the clock, now 8 am. Oh my only 15 minutes until they HAD to be leaving to catch the bus and I still was not through the gate. 2 minutes later I see ALL the traffic stopped so they could have someone turned around (probably to go to the main gate).
Finally, I get home and discover Ellie is dressed but no shoes, no nebs even started!!! Oh my! OH CRAP! were the next words out of my mouth as it was NOW 8:05 and I only had 10 minutes, to get meds, prime the feeding pump bags, prep the back back, give a neb, get shoes on this child, and yes I was praying her extension could hold out for the day AND that she did NOT have PE today. Very quickly, I did everything as fast as i could and yelled at the boys still playing in their room without socks or shoes on their own feet, no breakfast eaten (oh yeah and this school state testing week).
Well when all was said and done the boys caught the bus, Ellie was ready and ran out the door just as the bus pulled away. So two kids missed the bus and had to be driven to school this morning and I am already wiped and glad to have a few minutes to sit and get stuff done.
I finally fell back asleep, then was awakened at 7:25 by a very frantic middle schooler who was ticked off that someone (mom hitting the wrong button oops) had turned off her alarm causing her to over sleep and miss her bus. Quickly we got her ready to go.
I gave Corbyn instructions on helping Ellie with getting dressed her neb started because I knew it would be a 15-20 drive to and from the school due to "rush hour" on coming base traffic. Knowing I would be back with about 15-20 minutes to finish Ellie's neb treatments, meds, get her feeding pump, bag and everything ready for school, this could be done with the time I knew I had. So I left with Jade to get her to school on time.
What I was NOT accounting for was that the trip to the school was a 7 minute drive, but getting back on base was a 25 minute drive (ack). Sitting there I see in one of the gate a random vehicle check and check the clock, now 8 am. Oh my only 15 minutes until they HAD to be leaving to catch the bus and I still was not through the gate. 2 minutes later I see ALL the traffic stopped so they could have someone turned around (probably to go to the main gate).
Finally, I get home and discover Ellie is dressed but no shoes, no nebs even started!!! Oh my! OH CRAP! were the next words out of my mouth as it was NOW 8:05 and I only had 10 minutes, to get meds, prime the feeding pump bags, prep the back back, give a neb, get shoes on this child, and yes I was praying her extension could hold out for the day AND that she did NOT have PE today. Very quickly, I did everything as fast as i could and yelled at the boys still playing in their room without socks or shoes on their own feet, no breakfast eaten (oh yeah and this school state testing week).
Well when all was said and done the boys caught the bus, Ellie was ready and ran out the door just as the bus pulled away. So two kids missed the bus and had to be driven to school this morning and I am already wiped and glad to have a few minutes to sit and get stuff done.
Tuesday, March 13, 2012
Back and forth to from the ER
Well I knew John Hopkins was going to be a great hospital and knew we would have an opportunity to get to know the staff there, I was sure hoping we would not have the opportunity to get to know them as well as we already are.
It seems that Ellie is requiring a bit more visits in and out of the ER at JHCH than anticipated due to the difference in travel here verses what we had in Colorado. Also we do not have the Special Care Clinic (SCC) here that we had there where all her care was met at. In CO within the SCC we were able to avoid many ER visits simply because the SCC has the care set up only for family with children like Corbyn and Ellie.
On the days we needed to be seen that day we were fit into the schedule in clinic instead of running to the ER unless it was after hours. Because of this set up many days we would go in for an appointment and plan to stay 4-6 hours (the same time we would have been there for the ER). If we were having respiratory issues we would not leave until we had been seen by the pulmonary team as well and had a PFT. While in the ER the respiratory team would have come, the PFT and other tests would not have been available. So while the setup made for intense and very long days, the comprehensive team approach made sure the whole child's needs were met.
Here we now live over an hour away from JHCH, our local peds clinic is only open 4 days full time and Thursdays everything here on base is closed by 1pm. By 4:30 everything medical is shutting down unless we at John Hopkins, or heading to the ER. While we have amazing local peds dr's the specialty dr's are the ones we have to drive for a distance for.
Since moving here to MD we have been dealing with increasing GI issues that are continuing to get worse. Right now we are just biding our time and trying to make it through the next 3 1/2 weeks when she has surgery scheduled to fix her laryngeal cleft. According to the notes from the TCH dr's the cleft does extend beyond her vocal cords, we just do not know how far beyond at this point. From my understand this means she has at least a grade 2 cleft. This would also explain her severe aspiration issues that have never truly resolved.
During our last ENT appointment and nasal scope the dr thought she saw signs of laryngomalacia when she was trying to determine the laryngeal cleft extent. So during the surgery they are doing both hard and soft bronchoscopies as the hard and soft allow access to different parts of the throat and allow for different tests. When younger Ellie did have laryngomalacia, tracheomalacia, and bronchial malacia.
They are also doing biopsies through an upper endoscopy to test for Eosinophilic Esophagitis, basically a severe allergy to foods that causes the esophagus to swell due to an over active immune system and white blood cells attacking the body. They are going to test her for other metabolic disorders as well. Hopefully once these tests are done and the results are back we will have a much better understanding of what is going on with her little body. Why we are dealing with a bowel ileus, very poor GI and bowel motility. Why we are unable right now to move her formula through her g-tube at a very high rate without her being in pain and getting severely constipated without high doses of Miralax on a daily basis.
We do not know what answers we will get at this point, if we will get any, or if we will stay within the idiopathic and unknown collection of medical diagnosis realm...
It seems that Ellie is requiring a bit more visits in and out of the ER at JHCH than anticipated due to the difference in travel here verses what we had in Colorado. Also we do not have the Special Care Clinic (SCC) here that we had there where all her care was met at. In CO within the SCC we were able to avoid many ER visits simply because the SCC has the care set up only for family with children like Corbyn and Ellie.
On the days we needed to be seen that day we were fit into the schedule in clinic instead of running to the ER unless it was after hours. Because of this set up many days we would go in for an appointment and plan to stay 4-6 hours (the same time we would have been there for the ER). If we were having respiratory issues we would not leave until we had been seen by the pulmonary team as well and had a PFT. While in the ER the respiratory team would have come, the PFT and other tests would not have been available. So while the setup made for intense and very long days, the comprehensive team approach made sure the whole child's needs were met.
Here we now live over an hour away from JHCH, our local peds clinic is only open 4 days full time and Thursdays everything here on base is closed by 1pm. By 4:30 everything medical is shutting down unless we at John Hopkins, or heading to the ER. While we have amazing local peds dr's the specialty dr's are the ones we have to drive for a distance for.
Since moving here to MD we have been dealing with increasing GI issues that are continuing to get worse. Right now we are just biding our time and trying to make it through the next 3 1/2 weeks when she has surgery scheduled to fix her laryngeal cleft. According to the notes from the TCH dr's the cleft does extend beyond her vocal cords, we just do not know how far beyond at this point. From my understand this means she has at least a grade 2 cleft. This would also explain her severe aspiration issues that have never truly resolved.
During our last ENT appointment and nasal scope the dr thought she saw signs of laryngomalacia when she was trying to determine the laryngeal cleft extent. So during the surgery they are doing both hard and soft bronchoscopies as the hard and soft allow access to different parts of the throat and allow for different tests. When younger Ellie did have laryngomalacia, tracheomalacia, and bronchial malacia.
They are also doing biopsies through an upper endoscopy to test for Eosinophilic Esophagitis, basically a severe allergy to foods that causes the esophagus to swell due to an over active immune system and white blood cells attacking the body. They are going to test her for other metabolic disorders as well. Hopefully once these tests are done and the results are back we will have a much better understanding of what is going on with her little body. Why we are dealing with a bowel ileus, very poor GI and bowel motility. Why we are unable right now to move her formula through her g-tube at a very high rate without her being in pain and getting severely constipated without high doses of Miralax on a daily basis.
We do not know what answers we will get at this point, if we will get any, or if we will stay within the idiopathic and unknown collection of medical diagnosis realm...
Friday, March 2, 2012
Ticked at Wells Fargo!!!
Oh my goodness I am so upset right now I just this email
"I am sorry but my Buyers have decided to terminate as they are tired of waiting and have found something else they like. Please have your sellers sign and good luck to you."
Yeah so much for Wells Fargo and their "caring and understanding" of our NEED to sell our house!!!!!!!! Since June we have had to submit the information over and over.
Round 1 we had to submit that paperwork 14+ times before the file was considered complete and able to be moved forward. We got senate involvement helping us to try and get the process moving quicker.
Round 2, again the paperwork was again submitted 8+ times. This time one of the hold up was they needed my proof of income. Our hardship letter CLEARLY stated I am a stay at home mother with NO income, our tax returns have me listed with NO income, our financial worksheet have me listed as UNEMPLOYED with NO INCOME!!! yet they still insisted I have to provide my income for the last 60 days. In order to do this I had to write a letter to Wells Fargo stating that I have not worked for gainful income since 1996.
They have also insisted on have Franks proof of income for Feb since the beginning of Feb. They stated that Dec was not his 2nd most recent proof of income as the middle of Feb we were to provide his Feb income statement. In the military we get the LES (Leave and Earnings Statement) a the END of the MONTH. Therefore Jan 12 was the most recent and Dec 11 was the most recent and 2nd most recent statements. Again we have to write a letter to Wells Fargo clarifying that we could NOT provide proof of income in the middle of Feb for the end of Feb which had not yet arrived.
Why does the bank treat is customers like this? Do they want the loan holders to walk away causing the bank in the end to lost more money than they would if they were to just let the property sell to solid buyers?
To many times Wells Fargo PROMISED us they would do this... and do that... and every time the promise was never followed through. They never called us back, we have left messages only to not have the messages returned.
Honestly right now I have to much other stuff on my plate, to many other stresses to be worrying about a house the bank refuses to let us sell. I can't afford the stress of continuing to fight with the bank with the other medical stressors we are dealing with at the moment. We have to focus on the kids and our current location right now, not the house in COO, not the HOA, not the bank. I just need the strength to be able to let this go because I can't keep fighting this and the other battles I have to deal with right now.
"I am sorry but my Buyers have decided to terminate as they are tired of waiting and have found something else they like. Please have your sellers sign and good luck to you."
Yeah so much for Wells Fargo and their "caring and understanding" of our NEED to sell our house!!!!!!!! Since June we have had to submit the information over and over.
Round 1 we had to submit that paperwork 14+ times before the file was considered complete and able to be moved forward. We got senate involvement helping us to try and get the process moving quicker.
Round 2, again the paperwork was again submitted 8+ times. This time one of the hold up was they needed my proof of income. Our hardship letter CLEARLY stated I am a stay at home mother with NO income, our tax returns have me listed with NO income, our financial worksheet have me listed as UNEMPLOYED with NO INCOME!!! yet they still insisted I have to provide my income for the last 60 days. In order to do this I had to write a letter to Wells Fargo stating that I have not worked for gainful income since 1996.
They have also insisted on have Franks proof of income for Feb since the beginning of Feb. They stated that Dec was not his 2nd most recent proof of income as the middle of Feb we were to provide his Feb income statement. In the military we get the LES (Leave and Earnings Statement) a the END of the MONTH. Therefore Jan 12 was the most recent and Dec 11 was the most recent and 2nd most recent statements. Again we have to write a letter to Wells Fargo clarifying that we could NOT provide proof of income in the middle of Feb for the end of Feb which had not yet arrived.
Why does the bank treat is customers like this? Do they want the loan holders to walk away causing the bank in the end to lost more money than they would if they were to just let the property sell to solid buyers?
To many times Wells Fargo PROMISED us they would do this... and do that... and every time the promise was never followed through. They never called us back, we have left messages only to not have the messages returned.
Honestly right now I have to much other stuff on my plate, to many other stresses to be worrying about a house the bank refuses to let us sell. I can't afford the stress of continuing to fight with the bank with the other medical stressors we are dealing with at the moment. We have to focus on the kids and our current location right now, not the house in COO, not the HOA, not the bank. I just need the strength to be able to let this go because I can't keep fighting this and the other battles I have to deal with right now.
Monday, February 27, 2012
Tubie Kid pictures for a special project
These pictures were pulled out and reposted for a special project. Not sure which will be used but when the project is completed a link will be posted for your enjoyment :)
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