Ann Story section #3 I hope

[Guest guest]

had had an x-ray that morning and he x-rayed her again, he could be over

exposing her unnecessarily. By this time I was not only furious, but spitting

mad. I asked that the patient advocate be called in. This doctor told me he

would not call her in and waist her time when it was obvious that I was telling

a

lie. Having been through the Munchausen issue earlier in her life I was in no

mood to put up with this person. I then left our daughter in the care of the

home nurse in the ER room and went to the patient advocates office myself. I

was hysterical at that point, partly due to being mad and partly due to being

scared. I had a little girl that was laying in the ER with 105 temperature

and very sick with very low saturation's, a home nurse who was telling me I

needed to get her help before it was too late, and an ER Doctor with an attitude

at the helm. I explained to the patient advocate as best I could through the

tears and ranting what was going on. I demanded that her pulmonary doctor be

contacted who had just seen her in his office that morning, and demanded to

speak to the head of the hospital. This person was wonderful! She not only

calmed me down, but got a hold of the doctor who I was told by the ER doctor was

impossible to contact, and got the head of the hospital on the line. Well, low

and behold the pulmonary doctor did in fact back my story that we had been

there that morning and an x-ray had indeed been taken, I wanted to stick my

tongue out and say " See I told you so! " ,however he felt that she could be

released

with antibiotics and said if the home nurse was not comfortable than to call

the agency and ask for another nurse. I was in shock! He had not come in to

see her current condition, but could make that decision over the phone. The

nurse that was with me happened to be our most trusted nurse and I knew if she

was not comfortable, something was really wrong. She had been with our

daughter for almost a year as her main nighttime nurse. I went back to explain

to

her what the pulmonary doctor had said and she was furious. Not knowing what to

do, we took the antibiotics and drove with my daughter 3 hours home. The

entire trip our home nurse didn't take her eyes off of her for fear she would

not

breath. She was very tired and weak and you could hear her struggle to

breath. Within 2 hours of reaching home, now around 3:30 in the morning the

nurse

said this child is dying. I about fainted! She told me to call the hospital

back and to call the genetics department and try to get a doc who would

listen, and not to give up. The on call Genetics doctor told me to bring her

back

in. So once again we packed her up and drove the 3 hour drive back to the

Children's Hospital. The grace of God was with us all the way. When we got

there, they took one look at her and rushed her back, wanting to know why we had

waited so long to bring her in for help. I was terrified and spitting mad at

the incompetence we had met up earlier in the day, and was now ready to " take

out " this nurse! I once again asked for the patient advocate person to be

called in as well as the head of the hospital. Not only did she have pneumonia,

but she was in congestive heart failure, and had been in it when she was sent

home the first time. The doctor that we got this time was in shock that she

had been sent home and the home nurse filled this doctor in on everything that

had been going on. Along with the on call Genetic doctor, this doctor in the

ER made sure she was admitted and we were told that her pulmonology Doctor

would be in in just a few hours. I was utterly exhausted, madder than mad,

scared to death, 3 hours away from home with a very ill child, no husband

because

he was at home tending to our son, and a now stranded home health nurse who was

just as tired if not more than myself. I was in no mood for any more people

with an ego/attitude problem. However low and behold, in comes the pulmonary

doctor with a chip on his shoulder and mad at me for making such a big deal

about the situation. It was then that we both asked for the hospital

stenographer

to come in and record what was being said. Basically this doctor knew he had

messed up big time, and instead of apologizing and trying to give her the

best care, tried to claim he was not at fault. After several hours of debating

the facts we both agreed that what was in the best interest of my daughter was

that we move forward to get her well, and from there on out if she was brought

in again with the same issues her chart would be flagged and the head of the

pulmonary department, along with the genetics department would be contacted to

insure that her care was given correctly. This is when I officially received

my beloved nick name of " Mito Mommy from Hell " .It was during the remainder of

that hospital stay that I over heard 2 floor nurses refer to me in this

manner. I couldn't resist and said to them " and darn proud of it, since my

daughter is still alive and wouldn't have been had I left it up to people like

you! "

and walked back into my daughters room in tears. Not the proudest moment in

my life for sure, but at that point I could take no more! Those two nurses

however after that were the nicest things to my daughter and I. Go figure!!!!

Shortly after this we had decided that no more children was the best

idea for us, however it was already too late, I was pregnant again, this time

with twin girls. Once again I was absolutely terrified! The doctors tried to

reassure me that the chances were very slim that these children would be

effected as well. I can remember thinking, Lord I am sinking now, how am I

going to

do any more? I had another rough pregnancy and at 61/2 months went into

labor. I delivered one of the twins, who did not live, and then carried our 3rd

daughter another 3 weeks. She was born tiny but strong via another C-section.

She appeared to be healthy although she was watched closely until she was

about 4 years old. At this time her migraines started in, as well as the muscle

pain and cramps in her legs. She had a horrible time with potty training and

still doesn't get the urge that she needs to potty until it is almost if not too

late. She has dealt with severe issues with her skin. She would get blister

type rashes, and raised itchy rashes that would cover her legs, torso and

upper arms. Many doctors looked at it, but no one could figure out what was

going

on with her.I was told it was everything from a food allergy, to I was

bathing her too much. They settled on extreme exema and told me she needed to

have

a heavy cream several times a day spread on the effected areas. She would

scream from the stinging of the cream even unscented creams, until 5 years later

we found Acid Mantle and Cetaphil Creams would not cause this side effect for

her. We have used these creams 2 to 3 times a day for the last 3 years.

Although her symptoms so far have been more mild compared to her brother and

sister, she too was diagnosed with Mito.

We had attended our first UMDF -United Mitochondrial Disease Foundation

Symposium in Philadelphia and for the first time met other parents who were

going through what we had been going through. It had been 7 long years all on

our own. No one had told us that there were other parents going through what

we were going through much less put us into contact with them. I had been

feeling so alone and that no one really understood or cared really.All we knew

was

our child had an extremely rare disease and we were in the fire pretty much

on our own. We found out about the UMDF quite by chance as my brother had been

trying to research what was happening to the kids and had come across the

website and called me.

Our oldest had started vomiting frequently during this time and was

hospitalized several times needing D-10 therapy and fluid. She was diagnosed

with

Cyclic Vomiting Syndrome. The hardest thing was getting our local ER to give

her the treatment she needed as soon as we arrived. We worked with our

pediatrician to develop a standing protocol that was kept in the ER nurses

station,

so when we came in, time was not wasted with each doctor trying to make their

own diagnosis of her, after all I was " only " the mother and most often they

would not listen to what I had to say about her diagnosis, even though we were

on the " frequent Flyer " program to the ER. IVs were becoming more and more

difficult to get in her and very traumatic for us both. I was having to feed

her every three hours round the clock. Due to her suffering from hypoglycemic

attacks. I kept this schedule up, plus worked full time as a teacher, took care

of an infant and my son with his raging fits as long as I could, for a little

over 8 months, but then I became so tired that I slept through one of her

feedings and she ended up in the hospital. It scared me so much that I had slept

through and had put her health at risk. It was then that we decided to put in

her G-Tube so that it would not be an issue again, she would receive feedings

via her G-tube through the night, and I could get some much needed sleep. It

was physically impossible for me to do what the doctors were expecting of me

any further. I gave it the best try I could, but I could go no further. This

was a hard decision to make as I felt I had failed her as her mother, but I

just physically could not keep getting only 1 1/2 hours of sleep at a time and

keep going, and the insurance was not willing to pay for any more nursing care,

and because we worked, we did not qualify for any State or Governmental help

for nursing care much less any other kind of help. It has turned out to be a

good decision for her health wise, but she has had to endure some social

aspects, more recently with a boy telling everyone at the Jr. High that she had

it.

That was one kid I was not too thrilled with! For the most part though, her

friends totally accept the fact that she has a tube hanging out of her.

My family had a very difficult time understanding the stress that having

3 ill children brings, as they live some distance from us. They even

questioned at times whether we were on the right track with them, and would

question

what I was being told by the doctors. I felt like I was stupid or something

and really didn't get it at times, even though I knew I did. I needed to have

trust in the very doctors who were fighting for my kids and I felt that others

were trying to break that trust constantly. I tried to be understanding with

family and friends, but a little questioning goes a very long way, especially

after years and years of it. It didn't seem to matter what I did, it was never

good enough, or I had made the wrong decision or was asked constantly are

they really as ill as all this. If I had a dollar for every time someone said

to

me, your kids look so good to be so sick! In other words, I took it as, your

children are just fine get over it lady! I had expectations of family

members that often were not met due to impossibility or denial on their part.

This

led to a lot of family stress at times, and my feeling very alone in the fight

to keep these children around. I even dealt with some anger. This was a

Genetic thing passed on to me by my mother and I was left holding the bag of her

messed up genes, both financially as well as emotionally. I can remember crying

out to God asking what I had done to be punished so severely. I knew that

thinking was totally wrong that God was not punishing me with having 3 ill

children, but at the time it sure seemed like it. I was told by my mother that

I

did not understand her position as the grandparent, that although I was the

mother, she had already buried 2 grandchildren, my oldest sisters first 2

children, who probably were undiagnosed Mito children, and it was very difficult

for

her to know that the possibility of it happening again was very high. It

wasn't that I didn't get this, but I needed help, and I didn't have the luxury

of

separating myself from the medical hell my family was living in and I was very

jealous that my family could. I remember telling my