<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.
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