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.

Thursday, April 18, 2013

Another day.

Today was an interesting day.  We braved the crazy rain/hail/sleet/snow to get to our ENT (ears, nose, and throat) doc.  Aly's stuff was no suprise.  Three ear infections in a month is way too many, plus you add on the reflux and MSPI so it will just be easier for her overall to get them and be done.  Besides, Maddy has had this surgery twice and we know Dr. E. takes like ten minutes each ear-on a slow day.  We also had to talk about adding a hearing test (Auditory Evoked Potential)-there is some concern that as a result of her event in Aug that her hearing might be affected...soo in order to prepare myself, I am going to convince myself she is deaf, so whatever they tell me will not be as bad as that.  I did not prep this way for the vision doc. and we all know how that turned out.  Dr. E. is also going to tack on the eye test.  This is called a VEP (visual evoked potential) and she will be set up similar to an EEG (and will still be sedated throughout both these tests).  I do not have a surgery/test date yet as this is three things to coordinate.  But it looks to be a long day.  At Childrens. Bleh.
For Maddy, there is something going on with her breathing.  But before we go hacking her tonsils and adenoids, we had an x ray done.  So we are also waiting to hear about that, but the probability of Madelynn having a surgery next month is very high.  This will be her third procedure for the every other month for those keeping track.

In my mailbox today was the results of Maddy's MRI.  It was not awesome and with a little help of google search, I could piece most of it together.  Since Maddy has CP seeing brain damage at some point should not be a surprise.  But, it still is.  Seeing that there are changes from her last one to this one is both icky and terrifying because of the fear of the unknown.  There is so much we still do not know about the brain and we want her to have the best life possible, but you kinda need a brain for that too.  The debate I am having now is whether or not the damage is due to her CP or her event in 2011 that caused lack of oxygen to her brain.  Who knows. But damn, those reports are cold and not fair to read.

Okay, but I am a sucker.  I didn't HAVE to read it nor did I HAVE to ask the genetics people to mail me a copy.  But I did.  Because I am sick in the head and like staring at a car wreck, I could not stop reading (and googling) until the report was finished.  I am smarter for it and have more focused questions, but my mental/emotional state could have done without it because I am tired of having my foundation shaken on what seems to be now a weekly basis.

Now we wait; waiting is not one of my super powers.  I don't like to wait and I don't like surprises.  Would like to get this over with so I might sleep more at night-not trying to ask for a lot, but sleep would help.

At 11:00 tomorrow it will be one week since we learned about Aly's eyes.  I have been asked, "but wasn't it just as hard to hear about Madelynn's CP?"  Honestly, no.  We KNEW there was something different about Maddy-did not pick CP, but still knew she needed something and was really behind.  Like I have said before, we did all those damn tests to make sure we have a "typically" developing child.  Now it looks like we will, again, be praying for the day she crawls or talks.  Oh what I would give for a hug (from both my girls).

Still here.  Still pissed.  Still fighting for my kids.  I want to fight less.  I want it to be easier.  Someday.


Wednesday, April 17, 2013

And then there is this

I have failed in my writing venture.  I have plenty of started posts, but nothing finished, so I am trying once again. 

I am angry.  Angry, like a slow burning, starting bubble and boil over and I might just bite your head off if you look at me funny.  That wall, the wall I have that allows me to be in public and around other people broke and as my folks say, I am full of piss and vinegar.  The truth is, I have been like that for a while, but it was manageable, but not anymore.

My 3 yr old, already this year, has had 2 surgeries and I know that she will have at least two more this year.  And that sucks.  Every other month she is having a procedure and I hate it.  To date, she has had 13 procedures that require her to be knocked out; this is not counting all her MRIs.  Her dx, to date, are: cerebral palsy, microcephaly, epilepsy, GERD, non verbal.  She cannot eat, talk, walk, etc.

My nearly 1 yr old...oh and this is where it gets so hard.  We tested, we went to weekly appointments for 9 months to be sure she would be a typically developing child.  We did, again, what we were "supposed" to do.  And maybe that was not fair to her.  All our hopes to see her roll over, crawl, walk, to say momma and help care for and protect her older sister when we are gone...maybe we had expected to much.

My 1 yr old has her own issues and they are: cerebellar hypoplasia, congenital heart defect (hole in her heart), Wolff's Parkinsons White Syndrome (also heart related), reflux, and MSPI.  Oh and she is very developmentally delayed as well

At least, that was all she had until Friday.

Friday,  I was told she is legally blind.

Tomorrow I will schedule when she will have ear tubes placed and when a more high tech vision test will happen.  This test will help determine what, if anything she can see, and what, if anything, can be done to help her.   The vision person on our team, at least on Friday, did not seem that optimistic.

Other than that, the days are turning, her older sister gets to school and things get done.  But, I don't remember when I last slept well and I am pushing the limit as to long a person should go without a shower.  

I just don't care anymore.  

Please don't tell me that God as a plan (and this is where people might get mad), because really?  This Guys plan is to almost have my two girls die and then force them to go through procedure after procedure just to have some form of a liveable life.  I mean in those two words, our lives had to change again and I know we have not risen above this new grief.  And, no, I don't want to know what I am supposed to learn or gain from this experience because frankly I am fucking tired of having this stuff happen to us over and over again.
Oh but there is more.

My baby girl will probably also get the cerebral palsy dx as well. 

yeah.  that is all I can say for now.

except....I don't know if she has even ever seen her mommy....