<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.)
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