<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.
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