<Recap from Phase Two: Three test were done in the ER of Todd's Children's Hospital and moved to the PICU (Pediatric Intensive Care Unit) waiting on the MRI results.>
Now the living nightmare begins. Tubes, hoses and all sorts of machines are being inserted and hooked up to my son's lifeless little body in his PICU room. Having no medical experiences, I am scared for my son and do not understand what is going on medically and fearing what is to come next. Finally, a resident doctor comes in the room. He goes into detail and recaps with me of what had taken place in the ER. The resident doctor questions me of what might have changed in Rocky's life in the past two weeks that could bring reasoning to what is happening now. I explained to him of his leg pains and headache that it had just come on...no warning, no signs, nothing...
I am told since we now know that he has excessive fluid on his brain and Papiladema (optic nerves) they are calling in a Neurologist and the doctor explains more in depth of what is happening and how the pressure in his brain is causing the Papilademia condition. The long day comes to a close with nurses in and out through the night as I lay by his side in his hospital bed. Dad gives a kiss good-bye and travels on home to take care of the other three children that were being cared for by my brother and sister-in-law.
The next morning we wake to specialized doctors and resident doctors asking questions which seemed like the same questions over and over. The results of the MRI are finally in. They didn't find any brain tumor in the MRI. Yes, I am relieved, but my son is still failing rapidly, and the new team of doctors do not know what's going on. I think or feel, that they wanted the MRI to show something so they could diagnose him, however, this wasn't the case.
Two days go by, and Rocky's appetite is slim to none. He can smell food and wants to eat, but every time he attempts to eat, the vomiting of this foam like substance reoccurs. This to me is a sign that his brain is suffering again, specially when he tells me, "Mommy, my head hurts really bad." I let the doctor know, and we are left with no option but to preform another spinal tap. Not only to relieve his headache, and to decrease any chances of Papalidema, but the doctors want to know if the pressure is as bad as it was in the ER.
They make arrangements for a another spinal tap, however, this time around, they will sedate him. I was relieved that sedatives would be use but very concerned about the dangers of putting him under, exspecially in his condition. The team of doctors prepare themselves as well as the room and they slowly put him under and a second spinal tap is given. They were correct, it wasn't as high as his first one (57cc's) however, it was almost just as bad. In two days, his pressure rose to 52cc's. Hardly a difference if you'd ask me.
What does this mean now? Well, they decided to review the MRI pictures a second time, perhaps they missed something. For the second time, they come up with nothing, his brain appears normal. This only leaves a huge puzzle in the minds of a team of doctors.
The next two days they monitor him in the PICU and he stabilizes. He is starting to build up an appetite, and ate a whole chicken nugget and two French fries and kept them down. His skin is still very pale and I noticed that the veins in his temples are VERY BLUE, as if I took a blue ball point pen and drew them and the veins on both temples appeared to be very close to the skin surface. It was quite visible in noticing the oddness of these temple veins. In my head, I was thinking it's because he's lost so much weight in the past two weeks, and the odd skin tone is probably what's making the veins more prominent.
As the doctors continually work around the clock in trying to figure out what is going on with him... a couple days later, he's improving a little more. He's sitting up in his bed, his blood pressure improves and he hasn't vomited in the past two days. Even though at this time they still don't know what caused this excessive fluid, and if it would return, he was by far not ready to leave the hospital, but, they decided to move him in to a regular pediatric room (or as Rocky put it "oh I am moving to a new apartment?" LOL)
Later that day we are discharged from the PICU and moved to our new room. Rocky was beginning to look a little better, and talking a mile a minute as he usually did (and still does) and he's sitting up in his bed admiring his new surroundings. He was excited to hear there was a "play room" on this floor and couldn't wait to check it out!
Shortly after we settled, the doctor comes in the room and starts to apologize. "I am sorry, I am really sorry..." I interrupt him and ask, what are you sorry about? (At this moment, seeing the look on the doctor's face and the continual remark, "I'm sorry"... the blood rushed out of my body and I almost fell faint.) He explains that they had sent Rocky's MRI to Pittsburgh Children's Hospital. (Now, they may have told me this while Rocky was in PICU, but under the circumstances, I may not have heard them.) The report back from the Pittsburgh doctor who read the MRI is that he located 3 blood clots in the Venous Sinus vein in Rocky's brain. Here's a link to what this vein is if you'd like to read more on this specific vein. http://en.wikipedia.org/wiki/Dural_venous_sinuses#Venous_sinuses.
I asked the doctor if he could retrieve Rocky's MRI pictures, for I wanted to see this myself. He then orders the scans to be sent to our room. In the meantime, one of the main causes of blood clots in the Venous Sinus is trauma. I am then asked if he's had any trauma to the head. Bob and I think back of ANYTHING, even a simple fall would have caused trauma and we come up empty handed. The doctor then explains that generally with the amount of blood clots he has, their first thoughts were child abuse. He explained to me that they contemplated on bringing in Child Welfare to interview us. I WAS FLOORED to say the least! I mean, I understand, there are MANY children that are abused, but this simply WAS not happening. The doctor reassured me, that the entire team felt and knew there was no child abuse. The confirmed this for a couple reasons. Number 1, was that he had NO other signs of child abuse (broken bones, bruises etc) and number 2, for there to be 3 major blood clots where they were, he would have had some type of scull fracture which definitely would have shown up in an MRI and there was no evidence of that. So they knew, it's not a child welfare case, that it's truly a medical mystery.
The doctor then explains this chain of reaction (for a lack of better term): Rocky, for some unknown reason developed these three clots in the Venous Sinus (keep in mind, the Venous Sinus has nothing to do with your 'sinuses'... it's just the name of the vein)~~ The Venous Sinus veins run parallel in your brain. They join to like a Y shape sorta located in the nape of your neck area but yet within your scull. Rocky had on one side, two small blood clots in one of the parallel veins and then he also had another clot right in the V portion of the Y where the veins meet. (I hope I made sense.) When veins develop a blood clot, it not only stops the blood flow, but it also dilates the veins because the vein is struggling to pass blood through in addition to that, there is also swelling of the vein.
So, in theory, what was happening to Rocky, due to the three blood clots, the veins in his brain were dilated, associated with swelling (which in itself would cause tremendous headaches). The blood clot that lodged itself in the Y of the Venous Sinus not only was dilated and struggling to pass blood it was also immensely swollen. It was swollen so badly, that the spinal fluid could not pass through down to his spine. Therefore as a result.... Brain pressure.
I've learned this as well and thought I'd share this. Our bodies produce about 10cc's of fluid every hour. This fluid is produced in our brain. Our body's work like clock work, once the fluid is produced, it then drips slowly down our necks and into our spines, and then is absorbed into our stomachs and we pass it through our bodily functions. This whole cycle takes place in each and every one of us without us even knowing it.
What was happening to Rocky, he was naturally producing the proper amount of fluid as he should BUT due to the blood clots stopping the path for the fluid to drip down, it backed up in to his brain. Hence why the brain pressure was excessively high and why two spinal taps were need so they could 'manually' remove the fluid off the brain. If this wasn't done, number one, he'd go blind and number two...................he would have died, the brain would have basically been crushed over time.
This is all making sense now. I pointed out to the doctor Rocky's veins on his temples. I showed him how they appeared to be so blue and large. He said that all makes sense. The majority of his veins in his brain were all dilated to compensate the passage of blood flow to and from.
By this time, the pictures of the MRI show up, the doctor creates a make shift X-ray light so he can show me exactly what to look for. I was astound to what I had seen. I am by FAR not any way NEAR a professional, but even to my naked eye, I could see a blockage. As I mentioned an MRI takes pictures in slices. When looking at the MRI pictures, and at each slice, the pictures show slices as if it's being sliced from your forehead to the back of your head. Your brain is a perfectly mirror image of each side (looking left side/right side) of your brain. It was clearly visible that the left side, in this one area had 'some type' of obstruction where there wasn't an obstruction on the right side. I saw this for myself, and I cannot believe, that no one at this hospital saw it for over four days and it wasn't until the pictures were sent to Pittsburgh before it was found. I NOW know why, when the doctor came in our room saying "I am sorry".... He KNEW that the team at Todd's should have found the clots. I personally think, they were so focused in looking for a brain tumor, they were oblivious to anything else. And who do you think suffered for that? It certainly wasn't the doctors?!?
So now the question............what do we do for this?
They feel that even though there wasn't any signs of head trauma, they felt that he must have hit his head in some way, in just the right place for the clots to occur. They keep him in the hospital for a couple more days and continue him on Diamox (the drug that tells his brain not to produce as much fluid), and we are discharged by the Neurologist and are to follow up with him. One of the first signs of brain pressure is Papalidima, so the Neurologist will be able to monitor this. We were also introduced to a Hematologist (blood doctor) who places him on Coumadin (a blood thinner) before we left the hospital and are scheduled for repeated labs every few days at our local hospital for blood levels to monitor his INR, PT and PTT (all levels to be checked when on blood thinners). We also schedule our first visit to the Hematologist for he'll have to be monitored closely. It's very rare to have such a small child on blood thinning medication. Both doctors are associated with Todd's Children's and I am reassured they were the best two doctors in their field of specialties.
We leave the hospital after a little more than a weeks stay and we drive back home and the entire drive home, all Rocky could talk about was his brothers and sister and how he missed them and how he can't wait to see them.
We arrived home and our entire block including my other three children, his cousins and grandma and grandpa welcome us home waiting curbside with huge welcome signs! We have a long road a head of us yet to come with follow up MRI's to keep an eye on the clots as they dissolve. I always thought a blood thinner medication was to dissolve blood clots but they do not. Only time and healing will dissolve a blood clot and it's a very slow process. If a clot dissolves to quickly it can dislodge and be fatal if it goes to your heart or lungs. So the Hematology department is a vital part of his care as well as MRI's. They want to make sure the clots are dissolving slowly and are still in their same location as they diminish. Therefore many follow up MRI's will be scheduled in the future.
Please continue to Phase Four. I do want to mention at this time, I am by far, not a writer and never will claim to be one. I may at times have misspelled word and my grammar may be incorrect at times. If there is something that you don't understand due to my writing and grammar skills, please do not hesitate to email me for a further explanation.
Saturday, April 30, 2011
Thursday, April 28, 2011
PHASE TWO: Our first hospital trip, test and results
<To recap from phase one, the eye specialist confirmed the Papeladima diagnoses (the eye condition of the optic nerves) and we are sent to Todd's Children's Hospital in Youngstown, OH.>
We arrive at the ER, Todd's Children's Hospital with two conditions they will be testing for as a result of the Papeladima diagnoses. The first test they are going to run is a CAT scan of the brain. They will be looking for any visible signs of a brain tumor. I laid Rocky on the cold white table of the CAT scan and the technicians inform Rocky, as well as myself, that he cannot move while the test is going and it will only take a few minutes. Rocky was an angel on the bed of the CAT scan keeping in mind, any other year old would be fidgety and fighting the ordeal. He was so ill, that even if he wanted to, he wouldn't be able move. As the table moved inward, he looked at me with his droopy eyes and gave me a smile as if the movement of the table was a soft sleigh ride. Within moments, the testing was over, and we are escorted back to the ER room. A long wait of two hours pass by and the results come back, they see no signs of a brain tumor.
By this time, my entire family who were able to come to the hospital were all sitting in the waiting room. I go to the waiting room to explain the CAT scan results and my mother says, "Aren't you happy there's no tumor?" I was very happy, beyond emotions that there was no tumor...however; I went into this hospital with two possible options of diagnoses. One is that of a brain tumor, and the other was Spinal Meningitis, which a 14 year old girl had just passed away that morning with Spinal Meningitis. So even tough I was relieved of no tumor, I still had to face the next challenge.
The ER doctors explained to me, to test for Meningitis, they will need to preform a Lumbar Puncher (Spinal Tap). I have never witnessed a spinal tap done and as they explained to me the procedure, I thought there is NO way he'll be able to go through with this test.
SPINAL TAP (This is how I can best describe how the procedure is done) Medical term Lumbar Puncher. They place a needle about 5 to 7 inches long and about the width of a tapestry needle (very thick gauge) in the lower spine. At the end of this needle is a tube, connected to the tube is a valve. Connect to the valve is a pipe that can hold up to 25cc of fluid along with another valve connect to another tube to collect fluids for testing. Once the needle is inserted in the lower back and directly into the spinal cord, under no antistatic, and this is very PAINFUL and one CANNOT MOVE, the valve is released (opened) and as gravity works, the fluid from the spine, passes through the valve, into the testing tube and then up the 25cc tube (this measures the brain fluid and pressure).
The doctors begin the testing. Rocky is rolled up into a fetal position to expose the lower spine. I explained to Rocky, that he CANNOT MOVE, no matter how badly it hurts. I am holding his hand and cuddling over him as the needle is inserted. He looks at me, with a tear rolling down his cheek (OMG this makes me cry as I type...) and with his other hand, he motions for me to come closer towards his face. I lean over further and I laid my check against his wiping his tear with my cheek, cradling him as tightly as I can, as he says to me: "Mommy, I am not having fun anymore"... As if it took this HUGE needle and the piercing into his spine for him to realize that the excruciating headache pain that he's lived with for the past two weeks was tolerable moreless 'fun'. It was truly heart-wrenching.
Another two hour waiting period, and results finally come back from testing the spinal fluid. The results revealed, NO Meningitis, however, it wasn't over...Even though there was no Meningitis... I do remember when they were preforming the spinal tap on Rocky, they had the 25cc tube connected, but as they released the fluid, the fluid flowed up the tube, spurted out of the 25cc tube. The doctor quickly added another 25cc tube on to the first, the fluid continue to rise up the second tube, reached the top of what now is 50cc tube and it the fluid sputters out over the tip of the 50cc tube for about 30 seconds or so. Eventually the fluid stopped spurting out...and they close up/finished the procedure.
As the team mentions to me, that the results for Meningitis were negative, the fluid he had was excessive. The normal brain pressure is around 10cc's of pressure. The doctors estimated that Rocky's brain pressure was about 57cc's of pressure. To put in perspective, that is like having 60lbs of brick sitting on your brain, morning, noon and night. It's incompatible with life as they explained to me. So even though he was cleared of Meningitis, we are still dealing with a brain issue. Is there an underline tumor they missed? Or what possibly would cause the brain pressure to be so high.
We are then informed, that he will be needing an MRI (A more intense testing that takes pictures in slices so they would be able to see in layers each part of the brain). We were then set up for the MRI test. They contemplated on putting Rocky under sedation for this test, because it's very loud and it last about an hour and 15 minutes or so. He was so lifeless at this point that he himself reassured me that sedation wouldn't be necessary. We then are rolled off to the MRI. He lays lifeless on the table as I caress his hair and rub his temples to relax him in hopes that he will fall asleep. Which he does, and for as loud as the MRI was, he slept through the entire test without moving an inch.
After the testing was complete, we knew that these results would take some time to read, and Rocky is admitted to PICU. He is placed on a drug called Diamox which is to tell his brain not to produce as much fluid. He at this point needs to lay completely flat, because basically his brain was being pressurised with all the excessive fluid, and by giving him a spinal tap and removing all but about 12cc of fluid, his brain has all this room and doesn't know where to go now which in itself, creates the opposite effect and gives another type of headache. So laying flat will help the brain adjust and figure out where it needs to rest.
Please Continue To PHASE THREE. it will be posted shortly on my blog.
(I do work 7 days a week, outside the home, so please bare with me w/ the PHASE UPDATES. I will get more updates as soon as I can.)
We arrive at the ER, Todd's Children's Hospital with two conditions they will be testing for as a result of the Papeladima diagnoses. The first test they are going to run is a CAT scan of the brain. They will be looking for any visible signs of a brain tumor. I laid Rocky on the cold white table of the CAT scan and the technicians inform Rocky, as well as myself, that he cannot move while the test is going and it will only take a few minutes. Rocky was an angel on the bed of the CAT scan keeping in mind, any other year old would be fidgety and fighting the ordeal. He was so ill, that even if he wanted to, he wouldn't be able move. As the table moved inward, he looked at me with his droopy eyes and gave me a smile as if the movement of the table was a soft sleigh ride. Within moments, the testing was over, and we are escorted back to the ER room. A long wait of two hours pass by and the results come back, they see no signs of a brain tumor.
By this time, my entire family who were able to come to the hospital were all sitting in the waiting room. I go to the waiting room to explain the CAT scan results and my mother says, "Aren't you happy there's no tumor?" I was very happy, beyond emotions that there was no tumor...however; I went into this hospital with two possible options of diagnoses. One is that of a brain tumor, and the other was Spinal Meningitis, which a 14 year old girl had just passed away that morning with Spinal Meningitis. So even tough I was relieved of no tumor, I still had to face the next challenge.
The ER doctors explained to me, to test for Meningitis, they will need to preform a Lumbar Puncher (Spinal Tap). I have never witnessed a spinal tap done and as they explained to me the procedure, I thought there is NO way he'll be able to go through with this test.
SPINAL TAP (This is how I can best describe how the procedure is done) Medical term Lumbar Puncher. They place a needle about 5 to 7 inches long and about the width of a tapestry needle (very thick gauge) in the lower spine. At the end of this needle is a tube, connected to the tube is a valve. Connect to the valve is a pipe that can hold up to 25cc of fluid along with another valve connect to another tube to collect fluids for testing. Once the needle is inserted in the lower back and directly into the spinal cord, under no antistatic, and this is very PAINFUL and one CANNOT MOVE, the valve is released (opened) and as gravity works, the fluid from the spine, passes through the valve, into the testing tube and then up the 25cc tube (this measures the brain fluid and pressure).
The doctors begin the testing. Rocky is rolled up into a fetal position to expose the lower spine. I explained to Rocky, that he CANNOT MOVE, no matter how badly it hurts. I am holding his hand and cuddling over him as the needle is inserted. He looks at me, with a tear rolling down his cheek (OMG this makes me cry as I type...) and with his other hand, he motions for me to come closer towards his face. I lean over further and I laid my check against his wiping his tear with my cheek, cradling him as tightly as I can, as he says to me: "Mommy, I am not having fun anymore"... As if it took this HUGE needle and the piercing into his spine for him to realize that the excruciating headache pain that he's lived with for the past two weeks was tolerable moreless 'fun'. It was truly heart-wrenching.
Another two hour waiting period, and results finally come back from testing the spinal fluid. The results revealed, NO Meningitis, however, it wasn't over...Even though there was no Meningitis... I do remember when they were preforming the spinal tap on Rocky, they had the 25cc tube connected, but as they released the fluid, the fluid flowed up the tube, spurted out of the 25cc tube. The doctor quickly added another 25cc tube on to the first, the fluid continue to rise up the second tube, reached the top of what now is 50cc tube and it the fluid sputters out over the tip of the 50cc tube for about 30 seconds or so. Eventually the fluid stopped spurting out...and they close up/finished the procedure.
As the team mentions to me, that the results for Meningitis were negative, the fluid he had was excessive. The normal brain pressure is around 10cc's of pressure. The doctors estimated that Rocky's brain pressure was about 57cc's of pressure. To put in perspective, that is like having 60lbs of brick sitting on your brain, morning, noon and night. It's incompatible with life as they explained to me. So even though he was cleared of Meningitis, we are still dealing with a brain issue. Is there an underline tumor they missed? Or what possibly would cause the brain pressure to be so high.
We are then informed, that he will be needing an MRI (A more intense testing that takes pictures in slices so they would be able to see in layers each part of the brain). We were then set up for the MRI test. They contemplated on putting Rocky under sedation for this test, because it's very loud and it last about an hour and 15 minutes or so. He was so lifeless at this point that he himself reassured me that sedation wouldn't be necessary. We then are rolled off to the MRI. He lays lifeless on the table as I caress his hair and rub his temples to relax him in hopes that he will fall asleep. Which he does, and for as loud as the MRI was, he slept through the entire test without moving an inch.
After the testing was complete, we knew that these results would take some time to read, and Rocky is admitted to PICU. He is placed on a drug called Diamox which is to tell his brain not to produce as much fluid. He at this point needs to lay completely flat, because basically his brain was being pressurised with all the excessive fluid, and by giving him a spinal tap and removing all but about 12cc of fluid, his brain has all this room and doesn't know where to go now which in itself, creates the opposite effect and gives another type of headache. So laying flat will help the brain adjust and figure out where it needs to rest.
Please Continue To PHASE THREE. it will be posted shortly on my blog.
(I do work 7 days a week, outside the home, so please bare with me w/ the PHASE UPDATES. I will get more updates as soon as I can.)
Our Life, struggling to live with it: Bahcets and Antiphospholipid- PHASE ONE
In an everyday or not so everyday life situation, do you often ask yourself, "Why Me?" This same question, over the past 10 years I have often asked but not so much for me, but for my son. What you are about to read on my blog, is what the past ten years have been like with my son, my family and our hopes for the future in struggling with his diseases.
If you don't already know, my name is Lori, and I am the mother of four wonderful children. Robert 22, Karissa 21, Luke 17 and Rocky 16. I have been married for 23 1/2 years to my husband Bob. For our first 14 years of marriage, it was a dream come true. We had our home and four beautiful and healthy children. I would say the only thing we didn't have was that white picket fence surrounding our yard.
In the spring of 2001, our lives changed when illness strikes, almost taking the life of my youngest, Rocky. This is by far, the worst fear a mother could ever imagine. Not knowing what's going on with your child.....knowing that specialized doctors are stumped and not knowing if tomorrow there will be life.
Let me take you back to when Rocky was 6 years old. A perfectly normal child until he begins to complain of pains in his legs as he struggles to walk. He walks on his tip-toes sluggishly and limping immensely barely making one step after the other. I begin to comfort him by massaging his legs and as I touch them, he feels even greater pain. With this, he also complains of a severe headache. Not understanding why his legs are so painful, and with the headache, I call his pediatrician.
The next day we go visit the doctor. He explains that Rocky probably pulled some muscles in his legs, and as for the headache, well, there is quite a flu going around and one main symptom of this influenza is that of a severe headache. We leave the doctor's office with instructions to give Tylenol. I began immediately with the Tylenol and followed with round the clock doses as prescribed.
A week goes by with continually giving Rocky the doses of Tylenol, but yet, his headaches are even more severe where he begins to vomit foam from his nose and mouth. His legs seem to have subsided a bit, but that could be because for this past week, his headaches have become worse with the vomiting, and he's now starting to become lethargic. I phone the pediatrician once again and the doctor explains, "This is a really bad flu, he'll just need to wait it out."
At this point, I am feeling this isn't normal, vomiting foam! This is my fourth child and I have been through many flues with my children and this was not the flu! The doctor insist that it is a flu virus and to continue with the Tylenol. The headaches were so painful, that I would make warm compresses out of a washcloth and run it under warm tap water and place in a sandwich baggie and place it on his head. Rocky would come up to me and say "Mommy, rock me." Which I would, only to have two minutes pass by and he say "I need to lay down." to which I would carry him to the couch. After a few minutes of lying on the couch, he'd look at me and say "mommy, rock me". This cycle continued for two more days. Every night I would lay him in bed with me, and continuously warm up his wash rag through the night and try and comfort him to no avail the pain still exist along with the vomiting of foam. Before my eyes, my son was withering away. Two more days pass, and Rocky says to me, "Mommy, I am so sick of this, I cannot stand seeing two of everything". I was floored by this statement. He hadn't mentioned this to me at all in the past two days that his vision is now viewing double, and only now he feels it's bad enough to say he's had enough of it! Can you only imagine? As you continue to read my blog, you will not believe what the pain levels were and for him to just now complain is truly a strength of a child that is beyond believable.
After him telling me of seeing double, again, I call the doctor, he asks me over the phone to give him a visual fields test. I immediately refused over the phone and told the doctor I will be up in 5 minutes. This child needs to be seen! I hung up the phone, put a coat on my son, and carried him out to the car.
We arrive at the doctors, and he takes one look at Rocky and realizes how he has diminished over the past week since he last saw him. He's lost about 10 pounds, his color is terrible and he at this point, the only way he can look up in to the doctor's eyes is to physically hold his head with both hands cupped under his chin to support his head.
There is silence in the exam room. I could see on the doctor's face that there is something definitely wrong and it's not the flu. The doctor now begins to look in Rocky's eyes...The doctor takes his little eye tool with the flash light attached, he looks in one of Rocky's eyes and it seemed like eternity as he studies this eye, only to move over to the other eye and repeats the long process. He goes back to the first eye, and again to the other. The doctor turns to me and says "I believe your son has a condition called Papiladema. My first thought was, OK, give him a pill and fix it. But I knew it wasn't going to be a quick fix as I wished, so I asked in fear, what is Papiladema? The doctor looks me dead in the eye and said: "Papiladema only occurs in two cases. One is with a brain tumor the other would be Spinal Meningitis.
The doctor proceeds to leave the room and I am left in the exam room with Rocky laying on the exam table as i am in total shock...thinking, no this can't be!!! A few minutes later, the pediatrician returns and tells me I need to see a eye specialist to confirm this diagnoses. He had an appointment arranged for me to see the top eye specialist in our county and that I was to meet him at 7:00 AM the next morning (Saturday).
Saturday morning arrives and my husband takes my son's lifeless body and carries it to the car, while my daughter (Rocky's sister) cradles his body in the back seat. The specialist is waiting for us and takes Rocky immediately into the exam room. Again, the same process, silence fills the air as the eye specialist moves from one eye to the next and back and forth. The eye specialist turns to me and says, "I have to confirm your pediatrician's diagnoses, he does have Papiladema, and it's approaching the 4th stage. Of course, my question is, what is Papiladema hoping that the specialist would have better knowledge and now how to fix it as soon as possible?
Papiladema (and I am not sure if the spelling is correct) is a condition that occurs when there is pressure/fluid on the brain. The fluid is so massive, that it's basically blowing up the optic nerves of the brain. Your optic nerve should be that of a perfectly round disc shape. The doctor explained to me that Rocky's optic nerves were that of a thin football shape. Papiladema has 4 stages. At stage 4, it's irreversible and one goes blind.
The question lies, what is causing this pressure? Is it a brain tumor? Is it Spinal Meningitis? Is it something else? The eye specialist didn't know what to do with us, so he asked us to wait in the lobby. My husband took Rocky's lifeless body out to the car, while my daughter (who was 10 at the time) stayed with me and walked the floors. The doctor returns and said that he did speak with my pediatrician and he ask that we go home, and that he is going to make arrangements at Todd's Children's Hospital (Youngstown, Ohio) and for us to wait for his call.
We received his call about a half hour after we arrived home, and instructions were given. The pediatrician even offered to drive us to the hospital (knowing both myself and husband were emotionally upset). We refused the offer and packed everything up and left for the children's hospital.
Please continue on to Phase Two
If you don't already know, my name is Lori, and I am the mother of four wonderful children. Robert 22, Karissa 21, Luke 17 and Rocky 16. I have been married for 23 1/2 years to my husband Bob. For our first 14 years of marriage, it was a dream come true. We had our home and four beautiful and healthy children. I would say the only thing we didn't have was that white picket fence surrounding our yard.
In the spring of 2001, our lives changed when illness strikes, almost taking the life of my youngest, Rocky. This is by far, the worst fear a mother could ever imagine. Not knowing what's going on with your child.....knowing that specialized doctors are stumped and not knowing if tomorrow there will be life.
Let me take you back to when Rocky was 6 years old. A perfectly normal child until he begins to complain of pains in his legs as he struggles to walk. He walks on his tip-toes sluggishly and limping immensely barely making one step after the other. I begin to comfort him by massaging his legs and as I touch them, he feels even greater pain. With this, he also complains of a severe headache. Not understanding why his legs are so painful, and with the headache, I call his pediatrician.
The next day we go visit the doctor. He explains that Rocky probably pulled some muscles in his legs, and as for the headache, well, there is quite a flu going around and one main symptom of this influenza is that of a severe headache. We leave the doctor's office with instructions to give Tylenol. I began immediately with the Tylenol and followed with round the clock doses as prescribed.
A week goes by with continually giving Rocky the doses of Tylenol, but yet, his headaches are even more severe where he begins to vomit foam from his nose and mouth. His legs seem to have subsided a bit, but that could be because for this past week, his headaches have become worse with the vomiting, and he's now starting to become lethargic. I phone the pediatrician once again and the doctor explains, "This is a really bad flu, he'll just need to wait it out."
At this point, I am feeling this isn't normal, vomiting foam! This is my fourth child and I have been through many flues with my children and this was not the flu! The doctor insist that it is a flu virus and to continue with the Tylenol. The headaches were so painful, that I would make warm compresses out of a washcloth and run it under warm tap water and place in a sandwich baggie and place it on his head. Rocky would come up to me and say "Mommy, rock me." Which I would, only to have two minutes pass by and he say "I need to lay down." to which I would carry him to the couch. After a few minutes of lying on the couch, he'd look at me and say "mommy, rock me". This cycle continued for two more days. Every night I would lay him in bed with me, and continuously warm up his wash rag through the night and try and comfort him to no avail the pain still exist along with the vomiting of foam. Before my eyes, my son was withering away. Two more days pass, and Rocky says to me, "Mommy, I am so sick of this, I cannot stand seeing two of everything". I was floored by this statement. He hadn't mentioned this to me at all in the past two days that his vision is now viewing double, and only now he feels it's bad enough to say he's had enough of it! Can you only imagine? As you continue to read my blog, you will not believe what the pain levels were and for him to just now complain is truly a strength of a child that is beyond believable.
After him telling me of seeing double, again, I call the doctor, he asks me over the phone to give him a visual fields test. I immediately refused over the phone and told the doctor I will be up in 5 minutes. This child needs to be seen! I hung up the phone, put a coat on my son, and carried him out to the car.
We arrive at the doctors, and he takes one look at Rocky and realizes how he has diminished over the past week since he last saw him. He's lost about 10 pounds, his color is terrible and he at this point, the only way he can look up in to the doctor's eyes is to physically hold his head with both hands cupped under his chin to support his head.
There is silence in the exam room. I could see on the doctor's face that there is something definitely wrong and it's not the flu. The doctor now begins to look in Rocky's eyes...The doctor takes his little eye tool with the flash light attached, he looks in one of Rocky's eyes and it seemed like eternity as he studies this eye, only to move over to the other eye and repeats the long process. He goes back to the first eye, and again to the other. The doctor turns to me and says "I believe your son has a condition called Papiladema. My first thought was, OK, give him a pill and fix it. But I knew it wasn't going to be a quick fix as I wished, so I asked in fear, what is Papiladema? The doctor looks me dead in the eye and said: "Papiladema only occurs in two cases. One is with a brain tumor the other would be Spinal Meningitis.
The doctor proceeds to leave the room and I am left in the exam room with Rocky laying on the exam table as i am in total shock...thinking, no this can't be!!! A few minutes later, the pediatrician returns and tells me I need to see a eye specialist to confirm this diagnoses. He had an appointment arranged for me to see the top eye specialist in our county and that I was to meet him at 7:00 AM the next morning (Saturday).
Saturday morning arrives and my husband takes my son's lifeless body and carries it to the car, while my daughter (Rocky's sister) cradles his body in the back seat. The specialist is waiting for us and takes Rocky immediately into the exam room. Again, the same process, silence fills the air as the eye specialist moves from one eye to the next and back and forth. The eye specialist turns to me and says, "I have to confirm your pediatrician's diagnoses, he does have Papiladema, and it's approaching the 4th stage. Of course, my question is, what is Papiladema hoping that the specialist would have better knowledge and now how to fix it as soon as possible?
Papiladema (and I am not sure if the spelling is correct) is a condition that occurs when there is pressure/fluid on the brain. The fluid is so massive, that it's basically blowing up the optic nerves of the brain. Your optic nerve should be that of a perfectly round disc shape. The doctor explained to me that Rocky's optic nerves were that of a thin football shape. Papiladema has 4 stages. At stage 4, it's irreversible and one goes blind.
The question lies, what is causing this pressure? Is it a brain tumor? Is it Spinal Meningitis? Is it something else? The eye specialist didn't know what to do with us, so he asked us to wait in the lobby. My husband took Rocky's lifeless body out to the car, while my daughter (who was 10 at the time) stayed with me and walked the floors. The doctor returns and said that he did speak with my pediatrician and he ask that we go home, and that he is going to make arrangements at Todd's Children's Hospital (Youngstown, Ohio) and for us to wait for his call.
We received his call about a half hour after we arrived home, and instructions were given. The pediatrician even offered to drive us to the hospital (knowing both myself and husband were emotionally upset). We refused the offer and packed everything up and left for the children's hospital.
Please continue on to Phase Two
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