For as long as this whole kidney disaster has been happening Tim has been complaining about serveral things: a headache, a whooshing noise in his head, and nausea. While all the doctors around us discussed kidney disease, dialysis, transplant, and what was associated it didn't feel right that these other symptoms were constant throughout the kidney failure, the dialysis, and the transplant. Tim has been constantly having a pressure in his head that was uncontrollable and this past week his vision was starting to decrease. His right eye had a blind spot right in his periphreal vision.. We decided to make an eye doctor appointment and they took us in right away. So Here we are.. in August, and just a year ago almost to the day he was at the eye doctors being told that he had a hemmrohage in the back of his eye and go to the eye doctor. So now a year later we were told by the same doctor that there was edema in the eye and that we need to go to the emergency room yet again. I packed a bag with some underwear, some pants, and my lap top and we made our way down to yale new haven hospital.... again.
We werent placed in trauma or cardiac this time but in the less severe section of the emergency room. They took Tim for a CT Scan and what they saw was a bleed in his brain. The neurosurgeon came in and they knew it was small, they knew it was blood, but they didnt know why. They did a function test to see how Tim was feeling and if he was competant to anwser questions. She looked at me and said she was amazed that he was walking and talking. Tim laughed and said I worked last week. She said that there will be surgery but they didnt know what or when and then they said that he will be admitted to the neuro ICU for constant monitoring. A second neuro surgeon came in and said a bunch of scary things. how that where the bleed was was centered near the fourth ventricle of his brain and that because the bleed is so close and the ventricle is what drains spinal fluid throughout the body at any time tim would need to be emergency intabated and drained from the brain to relieve some pressure. That freaked me out and that was all that was on my mind after that.
Coming up to the room was very scary because I work here and I know what the neuro icu is like.. nobody walking and talking.. 90% intabated and constantly monitored by nurses, computers, brain monitors. They checked his vision and motor function every hour that night. I was a wreck and constantly stood up to check on him, sit down to relax, stand up again.. but I didnt know what to do with myself, so I went back to Tim's house to try to get some sleep. Which didnt happen at all.. I came back at 630 in the morning and Tim had his MRI done but no results were in... around 11am the head of the neuro surgery department came in and said that they believe that there was a mass of some sort in the brain. He was not sure and wanted to consult with neuro oncology to have a better understanding of what they can do and what was the next step. An entire afternoon went by and then they came back in. I was home because I needed a rest (the wait is the hardest part)
So they said there was defininetly something there.. and that it was there for a while.. in fact it was there last year (august) when he came in and they diagnosed him with kidney failure. But it was not noticed until now (we will get back to that one later) Anyways they said that it grew a tiny bit but now it is pressing against this ventricle and not allowing the spinal fluid to go through.. which is why he has been nauseus, hes been foggy, and have been very irritable. Although the news is devistating we are glad they have finally been able to pinpoint the issue and why this has been happening to him for an entire year straight. They only way I can express the way Tim was feeling was imagine that you have a sharp pain and constant pulsating pressure all over your head, severe neck pain, and then you are so dizzy that you start to get nauseous and then throw up everywhere. It was like that for Tim 24 hours a day seven days a week for an entire year.
So he goes for surgery to take this crap out of his head and determine what the hell it is. Because they have been able to determine that hes had this for so long they are very positive that it is not a cancerous growth because if it was a cancer then he would not be here today to present these problems to everybody.
He was able to get up and take a shower and is the only one that has been able to walk around on the intensive care unit. They all love him although last night when he talked to his best friend from California he was yelling and talking really loud because he was excited to tell him how much he wants to come visit and his whole story. This all sounds like a crazy novel and we like to tell our story because it truly has been a crazy journey thus far.
Although things have been terrible Tim has kept a smile on his face. He is so excited that they found out what it is and to get it out. He is anticipating waking up later from surgery without a headache and to be able to live a normal life again. He said that this alone is worth the scary thoughts of an unsuccessful surgery.
The only frustrating thing about all of this is the fact that we were completely ignored every single time that Tim and I complained of our issues and concerns with obtaining a CT scan and an MRI to just rule out that something was wrong on his brain or in his head. There has been over 200 times that tim has complained to all 40 of his doctors whether it was in transplant, primary care, rheumotolgy, nephrology, cardiology, dialysis, chemo... hemo.. and in the hospital. and not one person gave us a referral to go see a doctor. And then I even told them I would pay out of pocket because I just want to rule out that something is not wrong with his head. I had did my own research and asked numerous doctors about intercranial hypertension and gave them ideas on why that he had these constant headaches but was constantly ignored. Its a terrible feeling to find out we were right about something so dangerous and devistating. I want to scream at the top of my lungs I told you so this entire time. I want to gather every doctor that ignored our request for a CT scan and I want to tell this how much life is going to change once Tim gets this surgery... I know that they couldnt stop this mass or tumor from happening but they could have found it and treated it before it got so dangerously close to his fourth ventricle. I am lost. I am angry, I am scared beyond words, I am livid, I am tired, and I am hurt. But I have to be strong for Tim.. I have to be strong for my family.. our son.. his parents, our friends... I have to ensure that nothing like this ever happens again and that it never happens again to anyone else.
I dont know what the outcome of all of this is going to be, but I place it in the hands of a dedicated staff and of course in the hands of God. I think that with everything there is a reason for all of this.. and a reason why this has not come up until now.. and when all is said and done Tim has a smile on his face with the mentality of a winner, and that is all the glory I need.
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