Monday, April 22, 2013

Need Your Help

Many of you know, I hate Children's Hospital.  They misdiagnosed Madelynn many times, told me I was crazy, and when she was not gaining weight (and her hair would not grow, or her nails, and you could see her bones) that there was nothing they could do (and this is just the GI department, don't get me started on the neurology department and how they would tell me one thing, our doctors another, etc etc)...we, lucky, were able to find help in the comfort of the Nebraska Medical Center.

Madelynn was just 7 months when we met Dr. Antonson and Jayne; she was very tiny and very developmentally delayed.  Our appointment went almost three hours, where Dr. Antonson held Madelynn and gave me a much needed break.  Plus, they LISTENED to me.  I was not crazy; Madelynn had/has severe GERD and was Milk Soy Protein Intolerant.  However, the damage to her GI system was severe, she needed an ng tube (through the nose) and was also treated for c.diff.  At the end of the appointment, my daughter who was still like a 2-3 month old smiled.  Her first smile was at Dr. Antonson.  Her second was at Jayne.

This was the beginning of a wonderful doctor patient  relationship.  They saved my child's life (and mine).

This next part is an excerpt of a letter I wanted to read to the CEO of the Medical Center.  He cut me off after I read my introduction.  This story is important.  and it needs to be heard.
Way back on March 27 2011 at 3:00am my 13 month old daughter Madelynn was struggling to breathe.  I paged Jayne and upon hearing the nature of Madelynn’s breathing told us to go to the ER.  I knew there was something wrong with Maddy, but I also knew the only medical person who would get back to us quickly was Jayne and we were so lucky as the ER saved her life.  Maddy had aspirated, was intubated, and in the ICU for a few days, before heading to the peds floor.  Once there, it was Dr. Antonson and Jayne who coordinated her follow up care as many tests were needed to determine what caused this event and to make sure it never happened again.

Because this team had saved Maddy’s life twice, my husband and I knew when we found out we were pregnant that our daughter’s middle name would be Jayne in honor of all the help and support she has provided.  This is important because at 4 months, my daughter Aly Jayne also was rushed to the ER and saved.  She too had to spend time in the ICU and on the peds floor.  On the day of her discharge, the pediatrician on the floor refused my GI team’s request for an apnea monitor.  This equipment was strongly needed as Aly’s test as to why this happened were still inconclusive.  It was Jayne who finally convinced the doctor on the floor to send us home with one.  Although we have not had major alarms sound, there have been enough to help gain more information about her to put more pieces of her puzzle together.

We waited and waited for the various departments to contact us regarding the tests run on Aly and months went by when Jayne called wondering if we had any results, especially the EKG.  We had received no information, along with no one discussing follow up care.  Jayne and Dr. Antonson talked and he ordered a repeat EKG.  The day of this appointment Jayne met me at the Med Center to sit with Madelynn.  Having special needs kids makes it hard to meet people and there are very few people who are comfortable with Madelynn.  My husband has a classified job and cannot leave the base for many of these appointments and it was a great help to not have to worry about Madelynn while this test was happening.  The EKG was abnormal and revealed that Aly has a hole in her heart and Wolfs Parkinsons White Syndrome.  Dr. Antonson was able to contact Dr. Ericksson and we had an appointment just over a week later.  Again, had these two not gone this extra mile for us, my daughter’s very serious and sometimes life threatening condition would not have been discovered.  Going home with the apnea monitor would have been the only way to tell if she went into cardiac arrest.

Things had just started to stabilize for us in the last few months and Jayne was able to write a letter to Medicaid about Madelynn.  It was this letter, which included more information than just GI and it looked at Madelynn as the whole child, which finally got us approved for help after waiting a three very long years.  No other team took the time to advocate for her as much as they did.

Then as they do in our world, things fell apart a few weeks when Aly was dx as being legally blind.  I could not think of anyone else to talk to other than Jayne.  She often knows of other places to help which is why Madelynn goes to MMI for the Medically Handicapped Childrens Program, rec. school, and both girls go weekly for therapy.  It was also around this time that the grumblings in the special needs community became louder about this team and I knew I had to ask if they were true.  Although Jayne had tried to protect me for weeks, I was more than heartbroken to hear her last day would be the 26th-one day before Aly Jayne turns one. 

There is no way for me to measure for you what these two mean to me.  All I know is I am now terrified as to what will become of the care my children need.  Childrens had their shot and messed up my daughter and we cannot go back there.  Dr. Antonson and Jayne saw my kids and not their disabilities.    A while back there were commercials about the Med Center helping save a boy’s life.  I often wanted to offer my story about my girls as parents do not realize they can take their kids to the Med Center ER.  When I tell this story about the care from the ER and our GI team, people listen and some switch doctors.  I have a long waiting list of people as desperate as I am now, to see a good, honest caring GI team.  Please consider keeping my team, they have been my voice for my children when I thought all was lost and had no where to turn.  I know nothing about running a hospital; all I know is to the community that I belong it, looks like the Med Center is getting rid of a Dr. with 35 years of service and his teammate who can tell what my children need by their cry.

For myself, I am trying to not be too emotional as we talk and  my list as to how they have helped us can go on for much more time, but for now, I wanted and need you to know how painful this is for my family.  It is an understatement to say we live in doctor’s offices.  Since Jan 2013, Maddy has had two surgeries, and will have at least 2-3 more this year.  Aly will be gearing up for surgeries and tests for her eyes and ears.  Going through all these procedures and meeting all these difference doctors has always led me to the same conclusion.  I highly recommend the Medical Center, largely due to the care we have received from Dr. Antonson and Jayne.  When medical center doctors tell me their procedures can only be done at childrens and to NOT take my children to the medical center ER, I fight to move them back to the Med Center.  I often lose this fight.  Childrens has pushed my family around for years, please do not allow them the power to push out and terminate good doctors as they already seem to be doing.  Since hearing about all of this, I can no longer recommend the Med Center to other families.  Please consider keeping a team that not only lives up to extraordinary care, but to our family, they define it.  


The Bottom Line:

1. I want Jayne working.  You cannot imagine the comfort in being able to page your team at a moments notice.  Bc Dr. Antonson is not allowed to see patients, neither was Jayne, so they flet her go her.

2.  Children's hospital needs to reinstate Dr. Antonson.  If they will not, then he needs to be allowed to go into private practice.  Because he is a member of the faculty, the two hospitals have to agree to make this happen.  Dr. Antonson needs to be able to see his patients.  We desperately need him.

3.  Children's hospital needs to stop monopolizing the medical field.  We should not be forced to receive treatment there when we have little confidence in their ability to treat our GI related issues.   

Please find me on facebook if you would like to help me get media attention about this, calling, writing letters, etc, I NEED YOU.  My KIDS need you.

1 comment:

  1. I want to help with trying to get Dean re-instated. I can not find the face book page. Or how to reach you either. I spoke with Jayne today and I have already 3 people lined up to write letters on his behalf. Please get in contact with me so I can get letters in. Thanks- Amber