<Phase Four recap: After a couple of months and multiple spinal taps at the first hospital, we are moved to Pittsburgh's Children's hospital for a possible shunt. However, Bahcet's is considered and he's positive to APS.>
Within a few hours at the new hospital, Pittsburgh Children's Hospital (PCH) Rocky was schedule for the spinal tap. The same as in Youngstown, he must lay flat for hours to give the brain time to adjust to the 'new environment' with the absence of the excess fluid. I made a trip or two while Rocky was sleeping and purchased a few more Beanie Babies at the gift shop so when he'd awake, I could ease the pain a bit with the happiness of a new Beanie baby to play with. He eventually adjusted after about a half of day and starts to talk and continues to lay on his back and tries play.
However, laying on his back is becoming more uncomfortable for him because the ulcers on his back side are at this point oozing with puss and extremely red in color and swollen and not to mention, very painful. In addition, he also, on and off for the past several weeks will have spurts of sudden diarrhea attacks. I thought the diarrhea was just because he was just so ill. But I did notice, he could just be walking and he'd look at me and say uh-oh. He had absolutely no control of bodily functions and it would come on so suddenly. It was basically water that would pass right through him.
We are introduced to a rheumatologist and she explains that some of the symptoms he's experiencing is related to a disease called Bahcets (sometimes spelled Behcets). The very watery, uncontrolled diarrhea, ulcerations on the bottom side, ulcers in the mouth, and Anti Phospholipid Anti Body (APS), Papiladema along with other eye issues, clotting... these were all symptoms of this auto immune disease, Bahcets.
Hearing this, I am thinking could we possibly getting to some answers? Is there a cure? How will we be able to find out if he has this if one cannot draw blood and test him for this. The answer that was given to me was one that I never thought would become true. The rheumatologist explain, the only way we can diagnose him with the disease will take about two years. This disease is studied over a coarse of two years, and there are 14 major symptoms associated with the disease and there are nine minor symptoms associated with the disease. In the course of two years, if Rocky continues to show signs of other symptoms, it will only be then when he could be diagnosed. So at this point, because he only has a few symptoms, it's not enough to diagnose him. So here I was, left with a word, a disease, that we still could do nothing about... All I wanted was one answer... and not one doctor from two different hospitals could answer it.
The rheumatolgist continued, as we know he has the ulcerations on his bottom side and in his mouth (but at this time the mouth ulcers had reduced to half, but never the less has had the history of mouth ulcers in the past few months.), and he has the watery diarrhea. In some cases of Bahcets, some of these uclerations are due to ulcers in the intestinal track. She explains that we are going to have to give him a complete Colonoscopy. This is a test where a tube like camera/scope is inserted through the rectum, and is basically forced through your large and small intestines and takes pictures of the inside wall of the intestines. After the pictures are taken, then the tube like camera is pulled in the opposite direction and removed.
Rocky is schedule in two days to have the colonoscopy. Before receiving a complete colonoscopy one has to rid there body of any particles. A certain drink is given to him a couple times which was horrible tasting but he was forced to drink. He could barely stand it and almost vomited each time he had to drink it. As he continues to 'clean his insides' the day prior, they also put him on Lovenox which is another type of blood thinner but is given by injection in the belly area. The medication burns as he would tell me. The Lovnox only last about 12 hours in one's system so it's more manageable to take him off the blood thinner for any type of operation procedures, unlike Coumadin which lasts about two days in your system. Once his blood levels are down to what is acceptable for a surgery level, and his body is 'cleaned out' the next day he is rolled down into the OR, sedated, and the procedure begins.
About an hour later, I am told he's in recovery and I am able to see him. God love him, the first thing he says to me is, "Mommy I want my unner-wear? Where is my unner-wear...the nurse took my unner-wear." I told him not to worry, that I have his 'unner-wear' and as soon as we are back up in the room, I'll put them back on you.
We stayed in recovery for a little while, only because he had been on blood thinners, and they were monitoring him for any bleeding. They did explain that he will show signs of blood in his stool for a few days after this procedure, but that is normal.
We finally reach our room and Rocky is in severe pain on his left side. I had no idea why he was in so much pain, when they told me prior to going in for the colonoscopy that there is generally no pain with this procedure. And for him to complain, was something that he hardly ever did. I mean, he's had brain pressure of almost 60lbs, and all he says is "Mommy I have a headache". His pain tolerance is very high, but he's crying because the pain is so bad.
Shortly after we are settled, I am doing everything in my power to help alleviate this pain in his side. To no avail, I cannot make him comfortable and go to the nurse's desk to see if he can have some Tylenol or something. It was then, when the doctor who preformed the colonoscopy arrived. The first thing she explains to me is "Your son will be in tremendous pain for a day or two." She explained, during the procedure, his small intestine was so tiny that the scope became lodged in his intestine. The area where it was lodged, the intestine was shaped into an L and they couldn't get the scope in or out of the bend of the L. They had to tug and pull the scope to dislodged it for about 10 minutes. Eventually the scope did dislodge, but in that area that it was stuck in, it's very irritated and it's going to be very sore. This all made sense now on why he was so very sore. The doctor did prescribe some pain medication for him as well as warm compresses as he needed them. The pain lasted for a couple of days and I believe we went through two cases of heat compresses.
The results come back from the colonoscopy and his intestines were clear of any ulcerations. And as they stated, he bleed for about two days. However, the next day, they did resume the Lovenox blood thinners and even though he's bleeding, he did heal from the colonoscopy and he needed to be put back on the blood thinners as soon as possible.
After the second day and feeling much better as far as the pain from the colonoscopy and we take our first trip to the children's play area. Rocky was in HEAVEN. Even though he wasn't well at all, he could actually walk around, look at toys and see other children at play. He chooses to play in a sand box! He had a couple of IV's in his arm, and the nurses had to wrap his arm in a plastic bag before he could play. We sit there and make things out of sand, and he looks at me and says mommy, I don't feel good, can we go back to my room? I pick his tiny body up and carry him to our room while he lays his little head on my shoulder.
I asked him what was wrong, and he said his belly hurt and his head was starting to hurt again. I laid him in his bed, and I laid beside him and caressed his head until he fell asleep. As he lay there sleeping, I thought perhaps the trip to the play area may have been a bit too much and was hoping once he wakes he'll feel better.
A few hours later, he finally wakes because a nurse walks into our room with this little silver tray. All I saw on the tray was needles... I thought HOW MUCH MORE can this child take...... Rocky looks at the nurse, and the tray, rolls his head towards me and says "Mommy, where are those going?" I said, "Rocky, I don't know. Maybe in your arm, maybe in your tummy or maybe in your bumm." He takes a deep breath and sighs, looks over at the nurse and rolls towards me and offers his back-side to the nurse without uttering a word. This child had accepted what was coming to him with out questioning one single thing. Even the nurse witness the power of strength on what Rocky had. I began to cry, the nurse began to cry.... I thought.....for 4+ months, with every twist in our road, I've been asking...WHY HIM, WHY HIM....WHY ME... WHY HIM...Why does a child have to go through so much! I have top doctors and am really no further ahead then what I was months ago. WHY HIM??? But yet, I have this child who has accepted EVERY twist and turn, every needle that entered his body, every spinal tap he had to go through, EVERY headache he's ever had and never uttered one word of WHY ME. This entire journey thus far he has accepted and is continually walking it with out questioning. Am I to do the same? Am I loosing my faith? Is this little 6 year old hear on earth to teach me and the rest of the world what life is about? To accept your path that is laid before you?
It was at this moment, where as much as our life had been twisted, and turned, and altered and almost loosing my son... where I had vowed, this is our life, no, it's not like yours, but it is the path the Lord has given us. We are to walk this path and never ask WHY ME... from that moment on with the strength of my own son, I learned to never question WHY... I've learned to love and appreciate your children and life as if there is not going to be a tomorrow. I've been asking why for over 4 months...why... and still have no answers. If anyone is going to change this, it will be him, with some help from me. The Epiphany of becoming an advocate for my son's health began.
From this moment forward... I refuse to take, "I am not sure" for an answer. If a doctor doesn't know the answer on the spot when I ask, then they better hit the books and figure out what the answer is. NO ONE needs to live life in a manor as my son has. The pain and suffering this child has endured over the months, I wouldn't even wish on my worst enemy's child.
From this moment forward... if I don't understand one single word that a doctor is using. I interrupt and ask them to put that word in layman's terms to where I can understand. I then will repeat to the doctor if this is what he/she is explaining to me in my layman's terms. If they say no, that's not correct... I then will repeat the wording until I can understand 100% of what they are doing or about to do and why.
The weekend comes, and PCH offers if Rocky would like to visit the museum. Being as he loved dinosaurs he was thrilled to go! Dad came down along with his sister Karissa, and PCH arranged for us to have a van ride to the museum. Even though Rocky wasn't well, his headache seem to be coming back, he wanted to go so badly and with that we accepted the hospitals invitation. Rocky was very week, too weak to walk, so PCH provided a wheel chair along with a vomiting bag, wipes and water in the event he would become sick during the tour. We await the van in the lobby, and he's excited but I can tell he's not well at all... he rests his elbow on the wheelchair's arm and holds his head. I told him, we didn't need to go, that the museum will be there tomorrow, and we can try again tomorrow. He says 'Mommy, I really-really want to go, but I am afraid I am going to throw up once I get there." I told him that the nurses packed us up everything we may need in case you do get sick, and it's OK if you get sick... but if you really want to wait and try tomorrow, that's OK too. He insisted to make the trip that day and didn't want to wait til tomorrow.
The van picks us up, and he seemed to be holding his own. We slide the wheelchair out of the van, prepare him in the chair and we wheel off into the museum. PCH provided the four tickets for us as well. We arrived inside the museum, and it was overwhelming to see the huge dinosaur. We begin to wheel Rocky up so he can view the massive size of the dinosaur and he begins to say he feels sick, we move him to a more private area and he begins to vomit. PCH gave us the phone number of the driver and we called him immediately and within moments he was there to pick us up. I just explained to Rocky, it's OK, we'll come back another day when you're feeling better. He said OK...
With the vomiting, and the headache coming back more severely over the hours, Rocky's eyes are checked, and sure enough they detect pressure build up. They inform us that he'll have to have another spinal tap. It's getting late in the evening and visiting hours are coming to a close, and Bob and Karissa have to leave so Rocky and myself give our hugs and kisses and see dad and sis out the door...Rocky reminds Karissa to tell Luke and Bobby that he loved them and to tell them about the big dinosaur!
At this time, the staff prepares a scheduled time for Rocky to have his 19th spinal tap. I signed all the paper work and with in an hour the spinal tap is done. The normal procedure of laying flat for hours begins, but it was night time and I lay with him in his bed, caress his head and he falls asleep peacefully.
A few days pass, and Rocky actually improves.... he even awoke and said, wow mommy, I can't believe I don't have a headache at all....it's like all gone!!! Which to me only meant, because of how he expressed himself, told me in his own way, that he's had a headache everyday since this all started. Him being headache free for the first time in months.....he was a whole new child!
A few more days pass, and he continues to improve and we are discharged from PCH with instructions with continual follow up care with hematology in Youngstown and we're told that he'll be on blood thinners the rest of his life. Youngstown will continual to schedule follow up MRI's to keep an eye on the blood clots in the brain. We also leave, knowing he was positive to Anti Phospholipid Antibody and the suspicion of Bachets. Now knowing that he's positive to APS and this may be one of the causes of why he developed the blood clots in the brain. The placement of a shunt was opted out. They see how he's improved over the weeks stay when we were there and where he himself knew that the headache was no longer there at all. These were all signs of the clots dissolving and the spinal fluid is flowing better. Would he need another spinal tap down the road? I of course had a feeling he would. But looking at him and seeing all his color is back, he's eating fairly well, and babbling on as he did when he was a normal 6 year old, could it be possible we are past the worst part? However, I knew by now, not to ask these questions and have learned to live... one day at a time.
Please continue to Phase Six... The months that follow.
Friday, May 6, 2011
Thursday, May 5, 2011
PHASE FOUR: A nightmare that last over 4 months...
<Recap of Phase Three: MRI results from Pittsburgh reveals blood clots in the brain. We finish our hospital visit with a long road a head of us with follow-up doctor visits.>
As we settled home, Rocky is so glad to be at home seeing his brothers and sister and trying to tell them, in his on little way what his life was like at a hospital. During our week stay at the hospital, both grandparents would come and visit and of course bring Rocky gifts. One gift he loved to receive were Beanie Babies. Little did I know at the time when he was receiving the Beanie Baby gifts that they would play a huge role in his in his therapy. See, with having two spinal taps, and after each one you need to lay flat for up to 24 hours, the little stuffed animals were perfect for him. He'd be laying on his back in his bed and hold them above and then play his imaginary games using the soft plush Beanie Baby toys. He absolutely loved them! So of course between what his grandparents had bought him, and the couple I bought him at the gift shop he had quite a few that he could show to his brothers and sister. His siblings knew he was very sick, and ew'ed and aw'ed over his little gifts and were so very happy that he was home. I on the other hand, held the other three as if there was no tomorrow because I missed them so badly. It was the first time I had ever been away from my children.
In this Fourth Phase, it's almost a blur as to specific details because the issues that occurred, reoccurred so many times that the only thing I could do was basically 'keep count'.
It begins approximately a week after we arrived home from the hospital. The dreaded words come out of Rocky's mouth...."Mommy, I have a headache." I would ask, is the headache like before, and he'd reply yes.
I would called the neurologist immediately and he ask for Rocky to come in right away. After giving him some Tylenol to try and relieve the pain we'd head off back to Youngstown to the office. It was vital for the neurologist to check his eyes to see if he could detect Papalidema. If the neurologist would detect the Papalidema, it only means one thing....pressure building up again on his brain. Sure enough, the optic nerves are distorted. He tells me we have no other choice but to admit him back into the hospital and do another spinal tap.
The neurologist office at the time was right across the street from Todd's Children's Hospital so I do what I am told, and drive the short distance to the ER admittance and re-admit Rocky. I am thinking how could this be happening? I cannot believe I have to subject him to another spinal tap... Isn't there any other way to fix this?!? Once we are admitted and placed in our room, I phone home to inform Bob and to make arrangements with the other children for I may not be home for a couple of days.
Within hours, Rocky is sedated and a third spinal tap is preformed. His pressure this time was around 38cc's, still hardly what you would call normal. The neurologist is baffled with this number being so high and how his pressure keeps building basically within days after receiving a spinal tap when he is on a drug to help stop the production of spinal fluid.
Dad finds a babysitter for the other children, and comes to visit us and to spend as much time as he can with Rocky...in the meantime, since I was caught off guard when we had gone to the office earlier that day, I was not prepared for an overnight(s) stay and I travel home to shower and spend some time with the other kids.
I arrive back to the hospital about two hours later with my bag in tow along with extra goodies that his brothers and sisters had made and little personal items of their own for Rocky to play with.
Again, the resident doctor had the same questions as he did during our first visit, but nothing had changed with my answers other than he did begin to eat a little bit. The resident doctor concludes that the blood clots are still quite large and they still are obstructing the fluid's path along with the veins still being swelled.
During the hospital visit, all his blood labs are drawn. His IRN is some what on the high side, so they decrease the dose.
During the next four months: The vicious cycle as I mentioned above, repeated itself 14 more times during the following four months. Yes, you read that right... Rocky endured 14 more spinal taps (a total of 17 at this point). Basically, while at home, he'd be fine for a couple or maybe even a few days, and all of a sudden, "Mommy my head hurts." Each time, I would immediately contact his neurologist and sometimes he'd ask to see Rocky in the office, other times he would have me go straight to the ER. Each time a spinal tap was done, his brain pressure would be anywhere from 38cc's to 50cc's.
To understand the risks and what a Lumbar Puncture/Spinal Tap is, here is link I online if you care to view. Or you can go on any search engine and type in Lumbar Puncture Procedure or Spinal Tap Procedure and many informative sites will show. There are even sites with actual videos of the procedure being done.
http://en.wikipedia.org/wiki/Lumbar_puncture
The past four and half months had been a living nightmare for my son. The dreaded words came yet once again..."Mommy, my head hurts." I couldn't believe it! That we'd have to go in for yet another spinal tap! And he'd have to go through this all again! Although, also during these past months, I became proactive. IF I DIDN'T try and find answers on my own, then at this point, I felt no one would. No one seems to know WHY he developed the blood clots in the first place. Also during these past months, if you remember I mentioned that Rocky had ulcers in his mouth and bottom areas... in addition, his legs would bother him on and off... one day he'd be able to walk, the next he'd struggle. Knowing a bit about on what's going on with his brain, these other conditions (leg pains, ulcers) were more less secondary and just chalked up to 'it's just the body working in defense of what's going on with the brain/clots,. I did a lot of research on the Internet. Some nights it would take me an hour to read one medical paragraph for I didn't understand every other word and would have to look it up on dictionary.com just to remotely try and understand what the paragraph was talking about.
Rocky does say, Mommy, my head hurts... after reading and researching, I was reading up on what is called a Shunt. This is a mechanical valve that is placed in the brain, and aids in spinal fluid draining. Why on earth hasnt' a doctor mentioned to me about a Shunt?? My God, you and I will probably NEVER experience a spinal tap in our lives, and yet, my son is on #17 in 4.5 months... I would think, whether one knows or doesn't know what's causing any type of brain pressure, probably after the third or fourth spinal tap, one would think he'd be a candidate for a shunt.
So when Rocky tells me again that he has a headache, I pack my bags, call the neurologist and proceed into his office, only this time, I tell him, " You either send him to Pittsburgh for better doctors or you seriously have to consider putting a Shunt into him."... It was only then, when the doctor felt that it maybe time to seek additional help and possibly placing a shunt and makes arrangements for us to go to Pittsburgh that day.
I leave the office and head off towards home to prepare for our trip to Pittsburgh Children's Hospital. I stop at my parent's house to inform them of our next move, and my dad willing offers to drive me to Pitt. for I've never driven there.
We take the 1.5 hour trip to Pittsburgh and before long, we are admitted. The routine questions are the same repetitive questions that were asked at Todd's. I understand though that I needed to repeat myself so this team of new doctors would have a better understanding of what his life has been like the past few months.
Bottom line, the doctor's detect Papalidema...Pittsburgh now prepares Rocky for yet his 18th spinal tap. However, they are taking in all of Rocky's conditions. The leg pains, and not being able to walk, the vomiting of foam, the quarter like ulcers on his bottom side, the massive ulcers in his mouth. They also run more blood test....
As days go by, the doctors suspect a disease called Bahcets. However this isn't a disease that one can draw blood and run test. This disease is all about counting the multiple symptoms that are known to be associated with this disease and if you carry enough of the symptoms, one is diagnosed with Bahcets. In addition to suspecting Bahcets, one of his labs comes back positive to "Anti Phospholipid Antibody Syndrome, (aka-APS). Here is link if you'd like to read more: http://www.medicinenet.com/antiphospholipid_syndrome/article.htm
Basically, APS is an auto immune disease that for unknown reasons, the body automatically over produces platelets (agents that you need to assist in clotting), but in Rocky, his immune system is telling him to constantly and over produce these platelets.
Now suspecting Bahcets, and now knowing he was positive to APS, brings up a whole new world of testing in Pittsburgh.
Please continue to Phase Five: Different route of testing in the new hospital.
As we settled home, Rocky is so glad to be at home seeing his brothers and sister and trying to tell them, in his on little way what his life was like at a hospital. During our week stay at the hospital, both grandparents would come and visit and of course bring Rocky gifts. One gift he loved to receive were Beanie Babies. Little did I know at the time when he was receiving the Beanie Baby gifts that they would play a huge role in his in his therapy. See, with having two spinal taps, and after each one you need to lay flat for up to 24 hours, the little stuffed animals were perfect for him. He'd be laying on his back in his bed and hold them above and then play his imaginary games using the soft plush Beanie Baby toys. He absolutely loved them! So of course between what his grandparents had bought him, and the couple I bought him at the gift shop he had quite a few that he could show to his brothers and sister. His siblings knew he was very sick, and ew'ed and aw'ed over his little gifts and were so very happy that he was home. I on the other hand, held the other three as if there was no tomorrow because I missed them so badly. It was the first time I had ever been away from my children.
In this Fourth Phase, it's almost a blur as to specific details because the issues that occurred, reoccurred so many times that the only thing I could do was basically 'keep count'.
It begins approximately a week after we arrived home from the hospital. The dreaded words come out of Rocky's mouth...."Mommy, I have a headache." I would ask, is the headache like before, and he'd reply yes.
I would called the neurologist immediately and he ask for Rocky to come in right away. After giving him some Tylenol to try and relieve the pain we'd head off back to Youngstown to the office. It was vital for the neurologist to check his eyes to see if he could detect Papalidema. If the neurologist would detect the Papalidema, it only means one thing....pressure building up again on his brain. Sure enough, the optic nerves are distorted. He tells me we have no other choice but to admit him back into the hospital and do another spinal tap.
The neurologist office at the time was right across the street from Todd's Children's Hospital so I do what I am told, and drive the short distance to the ER admittance and re-admit Rocky. I am thinking how could this be happening? I cannot believe I have to subject him to another spinal tap... Isn't there any other way to fix this?!? Once we are admitted and placed in our room, I phone home to inform Bob and to make arrangements with the other children for I may not be home for a couple of days.
Within hours, Rocky is sedated and a third spinal tap is preformed. His pressure this time was around 38cc's, still hardly what you would call normal. The neurologist is baffled with this number being so high and how his pressure keeps building basically within days after receiving a spinal tap when he is on a drug to help stop the production of spinal fluid.
Dad finds a babysitter for the other children, and comes to visit us and to spend as much time as he can with Rocky...in the meantime, since I was caught off guard when we had gone to the office earlier that day, I was not prepared for an overnight(s) stay and I travel home to shower and spend some time with the other kids.
I arrive back to the hospital about two hours later with my bag in tow along with extra goodies that his brothers and sisters had made and little personal items of their own for Rocky to play with.
Again, the resident doctor had the same questions as he did during our first visit, but nothing had changed with my answers other than he did begin to eat a little bit. The resident doctor concludes that the blood clots are still quite large and they still are obstructing the fluid's path along with the veins still being swelled.
During the hospital visit, all his blood labs are drawn. His IRN is some what on the high side, so they decrease the dose.
During the next four months: The vicious cycle as I mentioned above, repeated itself 14 more times during the following four months. Yes, you read that right... Rocky endured 14 more spinal taps (a total of 17 at this point). Basically, while at home, he'd be fine for a couple or maybe even a few days, and all of a sudden, "Mommy my head hurts." Each time, I would immediately contact his neurologist and sometimes he'd ask to see Rocky in the office, other times he would have me go straight to the ER. Each time a spinal tap was done, his brain pressure would be anywhere from 38cc's to 50cc's.
To understand the risks and what a Lumbar Puncture/Spinal Tap is, here is link I online if you care to view. Or you can go on any search engine and type in Lumbar Puncture Procedure or Spinal Tap Procedure and many informative sites will show. There are even sites with actual videos of the procedure being done.
http://en.wikipedia.org/wiki/Lumbar_puncture
The past four and half months had been a living nightmare for my son. The dreaded words came yet once again..."Mommy, my head hurts." I couldn't believe it! That we'd have to go in for yet another spinal tap! And he'd have to go through this all again! Although, also during these past months, I became proactive. IF I DIDN'T try and find answers on my own, then at this point, I felt no one would. No one seems to know WHY he developed the blood clots in the first place. Also during these past months, if you remember I mentioned that Rocky had ulcers in his mouth and bottom areas... in addition, his legs would bother him on and off... one day he'd be able to walk, the next he'd struggle. Knowing a bit about on what's going on with his brain, these other conditions (leg pains, ulcers) were more less secondary and just chalked up to 'it's just the body working in defense of what's going on with the brain/clots,. I did a lot of research on the Internet. Some nights it would take me an hour to read one medical paragraph for I didn't understand every other word and would have to look it up on dictionary.com just to remotely try and understand what the paragraph was talking about.
Rocky does say, Mommy, my head hurts... after reading and researching, I was reading up on what is called a Shunt. This is a mechanical valve that is placed in the brain, and aids in spinal fluid draining. Why on earth hasnt' a doctor mentioned to me about a Shunt?? My God, you and I will probably NEVER experience a spinal tap in our lives, and yet, my son is on #17 in 4.5 months... I would think, whether one knows or doesn't know what's causing any type of brain pressure, probably after the third or fourth spinal tap, one would think he'd be a candidate for a shunt.
So when Rocky tells me again that he has a headache, I pack my bags, call the neurologist and proceed into his office, only this time, I tell him, " You either send him to Pittsburgh for better doctors or you seriously have to consider putting a Shunt into him."... It was only then, when the doctor felt that it maybe time to seek additional help and possibly placing a shunt and makes arrangements for us to go to Pittsburgh that day.
I leave the office and head off towards home to prepare for our trip to Pittsburgh Children's Hospital. I stop at my parent's house to inform them of our next move, and my dad willing offers to drive me to Pitt. for I've never driven there.
We take the 1.5 hour trip to Pittsburgh and before long, we are admitted. The routine questions are the same repetitive questions that were asked at Todd's. I understand though that I needed to repeat myself so this team of new doctors would have a better understanding of what his life has been like the past few months.
Bottom line, the doctor's detect Papalidema...Pittsburgh now prepares Rocky for yet his 18th spinal tap. However, they are taking in all of Rocky's conditions. The leg pains, and not being able to walk, the vomiting of foam, the quarter like ulcers on his bottom side, the massive ulcers in his mouth. They also run more blood test....
As days go by, the doctors suspect a disease called Bahcets. However this isn't a disease that one can draw blood and run test. This disease is all about counting the multiple symptoms that are known to be associated with this disease and if you carry enough of the symptoms, one is diagnosed with Bahcets. In addition to suspecting Bahcets, one of his labs comes back positive to "Anti Phospholipid Antibody Syndrome, (aka-APS). Here is link if you'd like to read more: http://www.medicinenet.com/antiphospholipid_syndrome/article.htm
Basically, APS is an auto immune disease that for unknown reasons, the body automatically over produces platelets (agents that you need to assist in clotting), but in Rocky, his immune system is telling him to constantly and over produce these platelets.
Now suspecting Bahcets, and now knowing he was positive to APS, brings up a whole new world of testing in Pittsburgh.
Please continue to Phase Five: Different route of testing in the new hospital.
Saturday, April 30, 2011
PHASE THREE: Results of MRI and Discharged From The Hospital
<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.
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.
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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