Anthony's story begins
December 13 1991. The year he was born.
To go into detail of some concerns we had for Anthony following his birth would be too long, as parents we can detect right away that something not right. Though as infants or even toddler it can be hard to really determine if you see abnormal behavior unless it is severe enough.
Most Chiari patients do not have a "telltale" sign something wrong. Its progression can be slow and most time the effects of Chiari do not come until adulthood. Even then some Doctors will not take your complaint to be serious.
To be correctly diagnosed is a miracle in it self, as I have learned not too many physicians know the effects having Chiari can cause with long term disabilities.
Even the Neurosurgeon that performed Anthony decompression told us his coordination; muscle weakness, bowel and bladder condition had nothing to do with Chiari malformation. "I just know that an 8-year old boy should not suffer with headaches and needs relief," The Doctor told us.
I have always been concern for Anthony, two years six months he could only say a few words. I was told by the Doctor to wait till three years of age if speech does not improve, get him tested. Yes, Yes, Anthony was tested and he could hear just fine.
Then we started speech therapy,
At almost four years of age we had him tested for early childhood education in which he did qualify for. The fallowing year Anthony started special preschool.
That was the year his headaches began. Anthony would stop whatever he was doing lie on the floor; play ground, ECT when he would get these attacks.
Few times his preschool teacher would call; I would have to pick Anthony up early from the school. "Anthony is having another headache and it's scaring me the teacher would tell me."
I began trying to find out why my son was suffering from these horrible headaches. There were so many tests done everything seemed to be normal.
The years went by and headaches grew along with week muscle, coordination problems, memory, and withdrawnness, losing taste for food, not sleeping, bowel and bladder problems.
When Anthony reached grade-school his headache grew worse, though no matter how many times I took him into the Doctors I left with no answers not wanting to return telling myself he not that bad, it is all made up in my head, I am looking for a problem that is not even there! "I am not going back in for this again" SURELY... I was right back at the office the next week.
Four years went by my concerns for Anthony never resolved many of times I would wish this time maybe she will order an MRI scan just to make sure nothings going on. Not one time out of the??? I was in the office was it suggested to see a specialist for Anthony.
Until 3rd grade, I had enough now realizing something is seriously wrong with my son. By now Anthony was forgetting how to spell simple word like "walk" or "Dinner" ECT His handwriting looked as if he was suffering a stroke.
I called the Doctor this time told her Anthony needs to see a Neurologist.
In which she agreed then referred us to one. With what I stated to the Doctor he ordered an MRI thought maybe a tumor, all of us were surprised to hear that Anthony had Chiari malformation at 16mm.
The Neurologist called a few days later to tell what was found it is nothing to worry about. The compression is not significant enough to cause any concern the doctor went further to say if this was one of my sons I would not worry about it, this is a fluke that was found it won’t hurt Anthony.
Very sicken in my stomach by his reaction I said "What about the headaches"
Chiari does not cause headaches up front. I told the Doctor Anthony's headaches are at the back of the head when he gets them he cannot move his neck. Oh well you did not tell me he got headaches back there.
The decision was made to see a specialist at Doernbecker children's Hospital.
November 10, 2000 we meet Dr. Nathan Selden.
Our first meetings he seemed very nice and told us Anthony's tonsil hang very low I can see where he needs surgery to relieve his pain.
My husband and I were so relieved that we were going to finally get help for our boy we had not took in the fact how much time this Doctor spent with us or Anthony until after the fact!
Dr. Selden exam Anthony then noted a few areas of concern. At that point we scheduled a surgery date, December 19, 2000.
December 18th we arrived for Anthony's pre-op with Sara, Dr. Selden nurse. Sara was very helpful and answered our entire question with great concern for our son Sara made sure every area of the surgery was explained. I had only seen Dr. Selden that day for a few minutes at that point he told us to be in at 7:00am December 19, 2000.
December 19th my husband's birthday, the date for Anthony's surgery. My husband and I along with Anthony arrived at 7:00am only to be told his surgery has been moved to 11:00am. I did not have a problem with that though my concern for Anthony who has not eaten since the evening before.
12:00pm this wonderful lady came out and asked Anthony what are the things he likes to do and what toys do you like. Anthony said I like to draw, build Lego.
She left and came back moments later with markers, coloring poster and a big container of Lego, she told Anthony they are his to keep. First she told Anthony I am going to show you around, took Anthony by the hand the two of them went exploring the Hospital." She had made Anthony feel very comfortable.
One more hour went by finally they called us back then had Anthony prep for surgery, Anthony took a shower washed his hair got dressed in a gown then waited about three hours more before taken him back to surgery.
Schedule in at 7:00 a.m. yet it was not until almost 4:00pm before they took him, I had a very high anxiety hungry little boy.
Anthony would go through moments of crying; "I'm afraid that I will die Mom" Anthony would whisper in my ear trying to hold back the tears. I would insure him that everything would be fine.
Both Anthony and I were exhausted from waiting not eating, with lots of time to THINK. At one point Anthony crawled up in my lap to be held as I rocked taking in the moment, the caroler came in singing Christmas songs. My emotion arose and all I could think was how could I do this to my baby, what a way to spend Christmas.
I asked if Anthony could have some medication to help with all the anxiety. At this point
He relaxed then fell asleep he never woke up until after surgery
At about 8:00 pm. evening of surgery, Dr. Selden came out from surgery told us the surgery went well. After Anthony was open up for surgery Dr.Selden said, I then realized decompression would not be enough; I have to make more room by opening the dura then placing a patch to extend the area. Anthony's tonsils are badly scarred from years of compression Selden told us.
A few moments went by and we were aloud to see our child, my heart was pounding stomach felt like dead weight as I walked into the room, Anthony's skin was pale and a wax glow to it. I leaned over to give him a kiss on the cheek as I lifted up I notice an impression of my lips were left on his face. I was told Anthony's body has been stressed from surgery so any touch to him will leave an imprint for a few seconds.
It was not long before Anthony was transferred to the ICU, Later that evening my parents and husband went back to the hotel as I stayed in the room with Anthony.
It was a very long night if the monitor was not going off Anthony was waking up to pain; the only word that he would say was "neck" which means I want more pain medicine. It seemed I would finally doze then either Anthony or the alarm would wake me up. I was so sicken that evening over what Anthony was going through all I could think about is how I never want to put my boy through this again!
The Nurse that stayed with Anthony that evening was wonderful and very good to Anthony and me. Anthony came to the ICU about 9:00pm the fallowing morning around 10:00 am I was told he would be moved to the children's room. Barley in ICU 12 hours I was surprised to hear the Doctor wanted to move Anthony so soon.
When we got upstairs to his room the staff lifted Anthony over to the other bed, being very careless to our son's condition his head fell back a horrible scream came out of him as he tried to support his neck. My husband and I told them he just had surgery on his head and neck you need to be more careful. No response was made from the staff as the walked out of the room.
The next three days I had learned a lot about Doernbecker Children Hospital. The number one lesson "Never returns". After ICU we receive no help from the staff. NONE!.
I remember the next day a nurse came in and asked if we have gotten Anthony up and walking yet? My husband and I just looked at each other, is not some one going to help us with getting Anthony out of bed? No that's your responsibility to get him up and moving. That is what we did live and learn yet in this condition it would not have hurt to teach. Besides the medication given to Anthony we received no help from the staff, well maybe a cool breeze as they walked by. The last evening we where they're a Nurse came I had not seen her before, she was very nice carrying to Anthony's needs she made sure I was comfortable too.
(Not to many like her around this hospital I thought to myself.)
Two days in pediatrics not much help from the staff, I'm surprised the nurse did not give us the medication and tell us to put it in Anthony's IV every four hours, everything else we had to do on our own.
YES I know they needed one reason to come in our room to say my son is receiving quality managed care.
Even though Anthony was very weak barely could walk to the rest room we knew that the staff was not going to give our son the care he needed so why stay, we can do this at home then be there for our other two sons also.
When Dr. Selden came in that morning we discussed going home, He said that would be fine In the five to 10 minutes he usually gives us each morning he talked with Anthony looked over him stated he is good to go.
Dr., Selden walked out the door we did not see or hear from him again until post - op.
The Nurse came in handed us a form with instructions for medication Anthony should take along with a phone number incase complications should arise.
Anthony did very well on the six-hour drive home. At one point we decided to stop for a quick bite to eat, Anthony's choice Burger King. Anthony could barely move yet wanted to go inside, Dad ordered the food as I took Anthony to sit down. Passing a group of older women Anthony could not help but catch their attention walks by them very slow and stiff, As we started to sit down, I can hear one of the ladies say did you see that poor boy as she pointed her finger toward us. (I would expect that from a child not from a grown adult). I was thinking
I would say at that point Anthony became self-conscious of his incision.
We arrived home with a loving welcome from our other two boys, amazed scared Adam and Andrew approached Anthony, The two were very careful not to do anything that would cause harm to Anthony.
Anthony was so happy to be home, his whole attitude changed for the better he started to recover faster then in the hospital
Just a few days after we returned home Anthony had complained that his head hurt over the right side of his ear. On many occasion I took him in to his pediatrician about this complaint Anthony had. I remember the Doctors saying it is pain from healing in time the pain will go away. I thought the same thing BUT when the pain turned to weeks then months I became concern that this was not healing pains. Though when again I would mention to the Doctor, she had no answers.
One thing Dr. Selden told my husband and I, as he preceded to hand us his card, if you have any question call or E Mail me. (Great, we told Dr.Selden.) As we found out Dr. Selden is not a man of his word. To many times to count I had E Mail Dr. Selden my main concern for Anthony's continuing pain over his right ear. Sure he would respond to my letter but it was always the same thing, (The law prohibits me from giving medical advice over the Internet without a written consent from you. Sara or I will give you a call). Needless to say those phone calls never arrived.
I finally got tiered of Dr. Selden telling me he or Sara would call then never did, I asked how do I go about signing a permission slip for medical advice over the net. I received a response that now he cannot give any medical advice through E Mail. WOW the Government sure changed the law fast! YEA, YEA, I know Sara or I will give you a call. (RIGHT)
We are here to find out why the pain over the right ear to the top of his head.
March 3, 2001 my husbands, I along with Anthony and Adam arrived at the MRI clinic at 11:00 a.am. after signed in one of the medical staff came out with some cream to put on Anthony's forearm. "This will make your hand to where you cannot feel the pain of the IV she said to Anthony." Ninety minutes later Anthony was called back to the prep room. Still, very anxious Anthony refuses to let them put the IV in his hand, 1234 12mg of versed was ordered to give orally to calm his mind.
It worked the medical staff was able to start a line, I was told it is time for Anthony to go back, at 1250 my son lying on the bed the Doctor administering 100mg of Nembutal and 15 mg of propofol sedation (Anthony staring up at me) "I feel strange mom, MOM!" Anthony having other MRI in our hometown, those words never utter from his mouth. He will be all right, I thought as my heart was taken an extra beat.
1:40 I was told Anthony's MRI is over, come on back he will be waking up soon, he was moving at deep stimulation like tickling or wiggling his lose teeth yet would not open his eyes talking to Anthony alone he would not respond. Twenty minutes then thirty and soon the nurse are wetting rags putting them on his face, body, sitting him up only for his body to move like a rag doll. "I was not expecting him to be out this. Long" stated the nurse. I will be right back, sure I thought about 30 minutes went by no medical staff was around Anthony was not waking up. Where is the Doctor my husband said he should not be out this long I don't understand why no one is here to help?
About 2:45 p.PM. The nurse came back in stood Anthony to his feet only to have them collapse from underneath him; unable to walk Anthony was placed in a wheel chair.
His head falling side to side as Anthony is trying to gain control, eyes are rolled back, speech slurred and hallucinating the boy who just told me I feel strange mom could not say a single word though he tried, all that would come out was sound. This is all my husband could handle, "I need to leave, I feel sick" my husband said. 3:15PM
My husband comes back with the nurse "Dr. Selden is waiting up stairs for you" as she proceeds to hand us the scans. According to the (AAP) Discharge criteria are as fallowed.
1. CARDIOVASCULAR FUNCTION AND AIR WAY PATENCY ARE SATISFACTORY AND STABLE.
2. THE PATIENT IS EASILY AROUSABLE, AND PROTECTIVE REFLEXES ARE INTACT.
3. THE PATIENT CAN TALK. (IF AGE APPRORIATE).
4. THE PATIENT CAN SIT UP UNAIDED. (IF AGE APPORIATE).
5 THE VERY YOUNG OR HANDICAPPED CHILD SHOULD RETURN AS NEAR AS POSSIBLE TO PRESADATION LEVEL OF RESPONSIVENESS.
6. THE STATE OF HYDRATION IS ADEQUATE.
It is quit amazing that Anthony could not talk, sit up without us holding him, reflexes were not intact when we left the hospital after seeing Dr. Selden Anthony still was not in his presadation level of responsiveness. Dr Selden noted two different times Anthony was too intoxicated to perform these task.
Afraid Anthony would fall from the chair. I had an arm wrapped around the front of him a hand on the wheel chair. My child had no reflex, his hallucination was so severe well lets just put it this way, Anthony was a normal little boy until he was sedated then he woke up to a
((((((world all his own)))))).
Surely Selden will attend to Anthony mental status I thought to myself. About an hour a half went by from the time we were told our son would be a wakening to the point we are to see Selden. Anthony speech was getting a little better but still he had no control of his body or reflex was intact, I want to walk mom! You can't Anthony you will fall, no I won't as Anthony proceeded to stand up I had a hold of one hand with his body falling into the wall, Dr. Selden nurse came out said Selden will see you now. Sara had one hand I had the other as we lead Anthony into the examining room.
To put this short, Selden came in told us the scan look great everything healing well he ask Anthony to touch his finger to nose and out again, testing reflexes I ask Dr. Selden can you really a perform those tasks with Anthony being in that condition? Dr. Selden said yes I just cannot have him walk across the room he is real googly. Five minutes went by Selden was done but before he ran out the door we asked him about the pain over the right ear? I looked over the scans his brain looks great nothing wrong, as Selden proceeds to feel then push over Anthony right ear. One loud scream came from my boy's mouth, Selden walks out to the viewing room not saying a word to us as he left, from across the hall Dr Selden yells to us what side is that again? The right! Oh yea I see the problem Anthony has a build up of fluid in his right mastoid, Selden walks back into the room informs us to seek an ear, nose, throat specialists in our local town. We left the Hospital at 4:30, having to wheel our son out to our car not one person question or thought it was normal for Anthony to be in this condition three hours after being sedated for a routine MRI scan.
