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.
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