23 Days - Going Strong

The days are a blur to me... I can only imagine how Tim feels. He is getting his strength back slowly and surely. He still has low grade fevers daily.. and they are running every test imaginable to make sure he doesn't have an infection anywhere else.. They repeated the Spinal Tap on Monday to determine the pressure of fluid in his head and also test the fluid for the bacteria that they are treating.... a Staph infection. His transplant is going strong. They cut back his immunosupressant drugs by half to build his immunesystem enough to help with the infection.. Transplant comes to see us everyday. Neuro didn't  see us at all last week. His Surgeon came in on Monday and said we must have missed each other last week... I was there 24 hours a day.. He said it will be another week but they think that they have the infection under control. They are going to test the pressure to determine if a shunt in his head is really necessary but he was 90% positive that the accumulation of water in his head has depleaded on his own.  Tim walked around the hospital with Physical therapy yesterday afternoon.. He has no trouble walking a straight line but side to side is very difficult. After he is discharged from the hospital he will take some time at a rehabilitation center to work on his left to right motions and continue to build strength in his legs. 23 days in bed has took a toll on him. He is very weak and needs to get out of bed but has gotten very lazy with that. He is so strong mentally but physically he is drained and it is going to take a very long time to get him up to pair with the physical aspect of everything.  His vision has not come back 100% although it has come a long way. He can look up, down, and to the right.. but the left is nearly impossible. His doctor said that it will come back over time but that it may take a while because they stunned the brain by being so aggressive with taking this tumor out. 
        23 days later and his mentality is back.. he is his normal grumpy self being nice as pie to the doctors and short and snippy with me.. just like I love him. He called me this morning to say hi and that he had a headache instead of telling the nurse he would like his oxycodone... (lol) and also to tell me that he was hungry instead of picking up the phone and dialing for his breakfast.. But I'm glad he was able to see well enough to dial the phone number to the house and that his memory of numbers and dates are becoming more clear. When I ask him questions like what month it is he is quick to say something different but then when I say... think about it... he says August.. his speech is very fast paced and he is more vocal than before. The doctor said it could have been slowed down and foggy because of the tumor so I may have had a blabber mouth on my hands and never knew it.  All in all things are going in the right direction.. If only we can figure out these fevers and beat them. His sodium levels have been stable with the sodium water therapy... those things are hard to overcome.. and he is thirsty and just wants to bathe in a pool of Orange Drink from McDonalds. They have limited his fluid intake to 1500 cc (1.5 liters) just so he doesnt pee out the sodium .. when sodium levels are low his mood can shift and become dazed and confused and I don't want that to happen again. 
          He still has persistant headaches but they think its because hes been in bed and not moving his head alot.. also where the tumor was they had to move his neck muscles around to get to the brain stem.... he has been taking medication for it but it seems that it only tops it off and doesnt get to the pain. We are hoping everyday that this resolves and that he doesnt have to be on pain management when he is out of the hospital but I'd rather him take pain medication to be comfortable than be in the pain that he was in prior to all of this. To go through all this crap and still have a headache is unacceptable. We are not going to stop requesting help this time.. we are never going to give up. You have to be your own advocate these days. Never stop trying .. especially if you have signs and symptoms of things for greater than a few days. Don't be ignorant and think that things will get better.. When your check engine light goes on in a car it doesn't magically resolve itself.. you have to get it worked on. Ask Questions... be cautious, and most importantly don't give up. Just never give up.
     I made a promise to Tim and to myself that I will be heard and seek out attention to try to be an advocate to others. I want to make sure that when someone is in pain or they have an issue that these Doctors are taking the time and listening to them instead of ignoring the problems that are blatently there. There have been thousands of times when I said.. Tim had no signs and symptoms and he ended up with Kidney failure.. These headaches are persistant.. there has to be something wrong if Tim went the entire time asymtamtic and now he actually had a sign.. and you are ignoring him. These specialists only look through a tiny whole in a window of issues.. Kidney specialists tend to think that everything is related to the Kidney and all the problems people have can be resolved once a transplant takes place. They don't stop to think of other areas of the body where issues can happen. The body works together to run properly.. The brain, the heart, the kidney, the liver, the pancreas, the heart etc are all connected and work together to keep the body in line. If Tim had kidney issues and heart issues.. why not scan and search and test all areas of the body to ensure that all his organs are properly functioning.. not just ONLY address the already broken ones.. ? If they diagnosed him with Lupus Nephritis.. how come they didn't check other areas of the body to see if the lupus had conquered another organ. If lupus did this much damage to one organ.. what makes them think that it stopped there? Luckily, they don't think that he had lupus this entire time and that some how the tumor was related to the kidney disease.. so if they found the tumor when they were supposed to last year on the CT scan that they never looked at.. would there have been residual kidney function that could have come back ?? would he have needed the transplant if they caught this when they billed us for checking so? Alot of questions that I have.. a lot of built up anger, but I know that medicine is a practice not perfected and ALL of these doctors can learn from this to prevent this from happening to another patient.. and I think that it was meant to happen like that.. And that I am the crazy manic that is vocal enough to get my point across to all these Doctors, Nurses, and Physician's assistants who don't look at the bigger picture.
       

Meningitis - staphylococcal

As we move forward (although it feels like we are always moving backwards) Tim is battling what is called Staphylococcal Meningitis which is a Staph infection in the cerebral spinal fluid. This was caused by the brain surgery that he had status post 16 days ago. We are battling this day by day by monitoring his temperature, and white blood cell counts. He had started running a fever last Sunday and they did what is called a spinal tap to test the fluid. Although at first they said it was highly doubtful that the culture and bacteria was most likely in the brain, it was determined on Thursday that it was. He has been on Vancomycin and Cefa Drugs since Last sunday. Last night and the night prior he had no fever. This is a good sign that he is breaking the infection. The antibiotics caused a thrush in his mouth so they are giving him a medication to help him with that. Otherwise he has a healthy appetitie and a good sense of humor through all of this. It seems as though his mentality is back to normal although he does not seem to remember certain dates or months very well. If I was caught up in a hospital for a month I wouldn't start to remember the month either.
            I've been working and visiting him constantly making sure the nurses are doing their jobs. Not one doctor has come to visit from neurology.. the PA says its because they are waiting for the infection to go down and its just a waiting game. Transplant doctors have come in everyday to ensure us that his kidney is healthy. They had to cut back on the immunosuppressant drugs because he needs strength to battle this infection. This may take a lot longer because he is in immunocompromised with the Kidney. But as long as Tim is in Good spirits and comfortable he is able to be strong and patient while all of this is going on. I have started to calm down a bit. I was a wreck the first 3 weeks. But now I just am angry at this infection and ready to stand behind him and fight the battle with him. I ensure the nurses are doing their job. Checking to make sure he needs to use the bathroom, helping him with getting up and down with physical therapy.. those things that some nurses tend to neglect with Tim. He can tell me who does what and who neglects him. Its all written down in a book that I will present to the medical director and other people once things have subsided a bit. People look at me like I am stupid being in the hosptial room all the time but it is all for a reason. The reason is I love my Tim and the second reason is everyone that has been neglectful since the beginning of this will have a talking to by several people. What has happened to Tim this past year has been a miracle and a disaster all at the same time. Although I think things happen for a reason and am very positive on the events leading to this.. it is because of my faith in God I have this output. But for someone that is fascinated by medical and has been persuing a job in the medical field I have another opinion on all of this. I am never going to let something like this every happen to someone else. I have to be an advocate to every single person in that hospital who asked for something or had a sign and symptom that was ignored. This will turn out all right for Tim.. I have my faith that it will, but this may not be a miracle case for everyone and how many times does this happen to people? I am ready to fight a battle greater than anything I have ever done and I am determined to have justice for the people who do not have knowledge of medical or someone in their family that does. People put a lot of faith into doctors and medical staff to be their care givers and to do the right thing. it's time they realize how truly important that really is to the livelyhood of our people.

I Shunt Complain

Two weeks and one day in the hospital. Seems like this is never going to end. I think that when I heard the words "Tim's survived the surgery" my heart wanted to believe so much that everything would be peaches and cream going forward, but it hasn't.  Tim has been dealing with double vision eye sight, neck pressure from where the incision is, to fevers as high as 102.6, as well as dealing with an infections. This kinda slapped me in the face with the reality of.. this is not going to be over for a while.
      The good news is he is out of the ICU and Step Down for that matter. They did a lumbar tap to gain some spinal fluid for testing. The tests take a couple days but so far they don't think that his infection is in the brain (meningitis) I am thinking he may have MSSA which is a staph infection of the blood or a urinary tract infection. Either way they have him on two different types of anitbiotics twice a day. Vancomycin is one and a Cephzollin type is another. The surgeons also told me that they will have to put a shunt in his brain. Because where the tumor was placed and that it was placed there for a least 20 years. the muscles on the fourth ventricle are parlayzed and stuck in the same position. This shunt will be placed (a metal stent lik thing) so that the spinal fluid to get back and forth the way its properly needed. This should help with the confusion, the aggitation, and incontinece (he rarely has that) and also help him see straight.
 I have some information on Shunts that also show signs and symptoms if you think this pertains to you or a loved one.

Brain Shunt

A shunt is a narrow piece of tubing that is inserted into the brain in the fluid-filled ventricle.  The tubing is then passed under the skin into another area of the body, most often into the abdomen.  Occasionally, the shunt tubing can be placed into one of the chambers of the heart or the lining of the lungs.  The shunt tubing relieves pressure on the brain, a condition known as hydrocephalus, by draining the extra fluid in the brain ventricle(s) to a different area of the body where it can be absorbed more quickly.

Types of Shunts

• Ventriculo-Peritoneal – The shunt catheter goes from the ventricle in the brain to the abdominal cavity
• Ventriculo-Pleural – The shunt catheter goes from the ventricle in the brain to the pleural space located outside the lung
• Ventriculo-Atrial – The shunt catheter goes from the ventricle in the brain into the right atrium cavity of the heart
• Programmable – These shunts have special valves that can be adjusted to allow more or less fluid to drain
• Fixed Pressure – These shunts have valves that drain at a set rate, either low, medium, or high

The type of shunt a patient receives is dependent on their symptoms and specific diagnosis.  Talk with your doctor about the exact shunt he or she will use during surgery.

About Your Shunt Surgery

For most shunt surgeries, patients are given general anesthesia to put them to sleep.  A breathing tube may also be inserted to assist your lungs throughout the procedure.
Patients are placed on a special operating room bed that allows for optimal access to the head and room for the surgeon to work and helps greatly reduce the potential for blood loss.
Your surgeon will make an incision in your scalp.  A small hole will then be made in the skull.  Your surgeon will then place the catheter into the ventricle.  The other end of the catheter will be tunneled under your skin into your abdomen, chest or heart, depending on where your neurosurgeon has decided.

Length of Stay

Your length of stay in the hospital depends on the reason you had a shunt and what type was inserted.  Also, patients may experience difficulty with walking, talking, balance and strength after surgery.  Most patients who have a shunt inserted will go home the day after surgery, but your surgeon will decide when you are ready for discharge.
If you require rehab before going home, a doctor from the Physical Medicine and Rehabilitation department will see you and make specific recommendations regarding your discharge.
You need to be able to walk, eat, urinate and your surgical wound must be healing well.

At Home

• You should continue to gradually increase your activity and walking within and outside the home is encouraged.
• Avoid lifting and strenuous activity
• You are not allowed to drive a car.  Your doctor will give you specific instructions about driving on discharge or when you follow-up in the office.  You can ride as a passenger in a car as directed.
• Sexual activity may resume when indicated by your doctor
• Remember to call and schedule your follow-up appointment with your doctor once you are at home
• If you have a programmable shunt, it will have to reset each time you have an MRI
• You may shower, but try and avoid bathtubs, whirlpools and swimming pools until cleared with your doctor.
• If you have steri-strips (strips of tape), cover your incision as directed by your doctor.  You or a companion may remove the tapes as directed.  If your tapes do get wet, you pay pat tapes dry or use hair dryer on cool setting.
• If you have staples, you may wash your hair but not scrub over incision.
• DO NOT apply lotions or creams near incision site.  No hair dying/perming until cleared by your doctor.

Contact your doctor immediately if:

• Swelling on around the incision
• Incision becomes red and hot or has drainage
• Difficulty breathing or chest pain
• Fever of 100° or higher
• Double or blurred vision
• Seizure
• Vomiting or nausea
• Severe headache
• Change in level of consciousness

http://www.brainandspine.org.uk/information/publications/brain_and_spine_booklets/hydrocephalus_and_shunts/index.html

I'm a tumor, I'm a tumor, I'm a tumor

I think that yesterday may have been the scariest and most intense day of my entire life... When someone goes in for surgery they have their nervousness and their doubts but they know that if something happens they are under and would never no. I truly believe that the people who have to sit in the waiting room next to their loved ones and family members have it the worst. I have to tell you, Tim's parents and relatives are a tough group of people. They were so positive and open minded and very optimisstic about this sugery. Me on the other hand.. was tired, hungry, drained, and freaked out beyong anyone could describe. I sat in that chair the morning of his surgery just staring at him while he slept and watching the clock for when the nurse was going to tell us that transport was going to be here shortly to take him down for surgery. I had a knot in my stomach and my heart was beating out of my chest. First they said noon, then they said one, then Three o'clock so when noon hit and transport showed up at the door I was so scared and sad because I thought I would have three more hours to just sit there and watch him sleep. I walked behind the bed as they transported him down to the operating room at the Smilow Cancer Center. They have a 16million dollar cancer brain tumor operating room designated just for people with brain tumors. the doctor said he absolutly did not need this big fancy schmancy room but that it was there and we might as well utilize it.
       His surgery began at 12:53... and I figured it would take an hour to shave the back of his head, and put him under anisthesea. and then 5 hours to perform the surgery. That was the longest five hours of my life.  I paced back and forth that room, walked to the bathroom, walked past the secretary... she talked to me and I told her the entire story (poor lady) and at about 4 hours in the buzzer rang...
     We waited for about 45 minutes in the consult room. I couldnt handle it.. I was like something is wrong, somethings not right.. this is not good, I was crying and not breathing right and the secretary told me.. listen. I can see what they are doing.. they update my screen.. operation ended at blah blah blah.. they stiched him up at this time.. and they are bandaging him up now.. meaning... hes good.. nothing bad happened. I started balling my eyes out.

The doctor came in and said.. Jackie (SMILING) I have nothing bad to say. I got up and hugged him for like 10 minutes (poor doctor)... he said that he was alert and talking.. and that hes acting like a drunken trucker right now but that was to be expected for a couple weeks after the surgery because of the sensors where the tumor was and they had to play around in there to get everything out. Then he said he wanted to talk to me about some crazy stuff.. He said.. I am beside myself.. I don't know how Tim has been able to function with this thing.. its a tumor only found in children.. I have never or anyone has ever seen this in an adult.. its completely cancer free.. just one of those tumors small children get and they take it out and make sure its completely outta there and they move on with their life. Its the best kind of tumor to find because it means no chemo, no radiation, and quick recovery. He then went on to tell me that he couldnt explain why they overlooked this a year ago but that it was a very good thing that whoever made that mistake did because he would have never been able to have a kidney transplant with that thing noted in his brain... it would have kicked him off of the eligiblity list for a very long time, and to top it off, if he didnt have a kidney transplant the doctors would have deemed him too sick to have the tumor taken out of his brain..
       He said that today has been quite the pheonimon of a day and that he is safe to say that there is someone of a higher power watching over every moment of this kids life. I was floored.

A Brain Mass? Seriously?!

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.