Just figured that I would write and tell you the absolute latest and give u the most up-to-date update!
Well, I went for that procedure on Friday that I explained in a prior message. I had to go because the osteonecrosis is worsening so much that the jawbone is protruding through my mouth more than ever, and I am having teeth and the nerves of teeth being exposed and the teeth are also dying. As a result, I am in a lot of pain. Even though they can’t really do anything to stop or prevent the bones from dying, they were going to at least try to help the teeth because they were worried that it could lead to a severe infection and I was also in a severe amount of pain.
Not only are the teeth dying, but the roots of the teeth are all exposed as well. Therefore, I constantly feel this gnawing and electrocuting pain that shoots from my mouth all the way up to my brain. It isn’t like I can’t bite or chew. It isn’t per se something thing wrong with the tooth itself, but rather it has to do with the tooth internally and the nerves. You know? Therefore, whenever anything touches the tooth or I drink or eat something, the teeth are extremely sensitive because the nerves are all exposed instead of being ‘covered’ like in a normal person. Whenever I eat something or drink something, I will get the worst imaginable pain ever. It will feel like I am getting a ‘tooth freeze/brain freeze’ and it will stay there for about an hour or so. You know when you eat something that is extremely cold and you get that severe pain in your brain and tooth that you call ‘tooth freeze/brain freeze?’ Well… that is what is happening to me every time I eat or drink anything because the slightest change in temperature that hits the tooth or bone sends me running for the hills since the nerves are all exposed.
The surgeons decided that they would try to do a really intensive root canal because they wanted to hopefully try to ‘save’ the teeth from being surgically removed. However, when I went to the doctor on Friday, it was determined that this cannot be the case. It really stunk too that they couldn’t do it because I really had to psych myself up big time to get it done and for me actually get myself to walk through the door. But why shouldn’t I be surprised because things like this always happen to me. Nothing ever goes according to plan.
Even though the doctor was the nicest doctor in the world and would have loved to do the necessary procedure, it was determined that it was really not a possibility. The doctor saw that it was a lot more complicated and intense than they originally thought, and it went far beyond just getting a really intensive root canal. The doctor said, “What was occurring was not just occurring in the teeth, and it went beyond the teeth and into the bones (jawbone) as well.” As a result, I would need a whole team of doctors to operate on me at once to take care of this problem.
In addition, the current anesthesia that they were giving me would no way be sufficient enough to hold me during the surgery that they needed to do. They needed the anesthesia to last at least 2-3 hours and they were even having a hard time getting it to even take for this procedure. They had the gas even turned up all the way and such, but nothing was really working. They were worried about the novocaine as well because it doesn’t even dull or numb anything. So, for them to do what was really needed and for that length of time… I would need a great deal of anesthesia and a different kind than they were giving me at this time. It was far more complex and went far beyond what they originally thought.
So I psyched myself up…went all the way for the surgery… and just when they got started, they realized it was going to be a NO GO!! All that for nothing and I am still in an enormous amount of pain!! All this and then it was discovered that it was much worse than originally thought and it was going to be one impossible surgery to do… one that is going to need to be done in the hospital with a whole team of surgeons and for me to be under for some time. So now I am here still in excruciating pain and awaiting the next thing to do. The surgeons now think that jaw surgery is especially warranted in addition to the surgery on the teeth. They are just afraid because they don’t want to make the osteonecrosis worse.
So that appears to be the story. I am here now waiting to hear the next plan of action. They are supposed to be meeting on Monday and getting everything organized and hopefully I will know what is occurring then. They are supposed to be getting me in for surgery as soon as possible, which I really hope is true because I am suffering so very much.
I am really nervous though because I am worried about how much this operation will now cost. I know how expensive the operation was that I was supposed to have on Friday that was not going to be nearly as intensive as the one I am going to need and we were barely able to pull it off… even with all the discounts that were given. We are sure that this surgery is going to cost even more money because it is so much more intensive and complicated, as well as there is so many more doctors that are needed for this operation to take place because it goes way beyond just an intensive root canal. I just hope that it is going to work out.
It is reasons like this that I really beg and wish that I really had the media’s attention. I really need as much help from other people as possible and if the media was able to know about my story and get t out, then so many people would be knowledable about my condition and perhaps able to donate. However, the only way really able to get word out that I desperately need this ‘help’ is through word of mouth since I am not really fortunate to have the media’s help and I am really hoping that you will be able to help me spread it as much as possible. I am extremely thankful for all the help that has already been given to me and the help that you have done, but I desperately need more help if I am going to get better. I cannot afford this expensive treatment on my own and therefore, I would really appreciate it if you can do anything to help. The more people that get wind of story, the more chance I will have that they will donate. I need all the help that I can get and the slightest donation will definitely go a long way because it is 1 less dollar than I have to come up with.
In the meantime, I am also really worsening and deteriorating. My stomach and GI system is really getting worse and it is at the point where I am basically passing absolutely nothing. I can go over a week’s time where nothing will come out because there is a blockage or a twist in the colon. I desperately need surgery to correct this, but we have been holding off because this surgery cannot be done on the local area and we really don’t have the funds for this surgery as well.
But it is getting so bad and I am getting in such severe pain that something really needs to be done ASAP. This is usually a life-threatening occurrence, but I have been fortunate that I was able to live with this blockage/twist of the colon because my colon is so dilated that I was able to ‘live’ with it this long. But like everything else, all things run out of time and therefore, I really need to get help. Whereas I was able to pass extremely limited things before even though it was extremely small and certainly not everyday, the time that it is taking to actually get something out now is basically too long and nothing is even coming out. So… things are definitely worsening and it really can’t go on any longer. My entire body is failing.
So we are in the process of trying to make plans for this as well. But like I said before, the funds aren’t there either, so we have to be careful with that as well. That is another reason why we so desperately need help. We are hoping though that by the time we get the treatment and the hospitalization planned and we go… we are hoping that the funds and donations might come in to help us. We are keeping our fingers crossed. After all, I desperately need the transplant in order to live, but I am too sick right now to even get the transplant and they need to get me stronger immediately so that I can receive the transplant so I can live, I can officially say never a dull moment.
In the meantime since funds are getting so limited, we had to make some more cuts in my treatment. I desperately need this expensive treatment, but when there is no money… it just can’t be done. I seriously wonder what this world would be like if money didn’t exist. So many things had to be cut that I desperately need such as hyperbaric oxygen and unfortunately you can’t get blood from a stone. I ma really hoping that I will be able to resume the treatments that I had to put aside, but of course it is dependent on the funds I raise. I really hope that I get back the hyperbaric oxygen treatment because I really saw lots of progress with that. I really also don’t want to lose my limbs and they were hoping that this treatment was going to hopefully stop the chances of that occurring since all the tissues are being deprived of oxygen and are dying. Never dull moment, right?
In the meantime though, the pictures finally came back that we took with the photographer and they were absolutely gorgeous. I received all the frames as well and I have been busy mounting all the pictures. I surprised my parents by mounting all the pictures into a collage frame for them and hanging it in their room. I wanted to surprise them and I really hope that they like it. This way they can always remember me. I put one up in my room as well. I also got individual frames for some special pictures for the desk of my mom and dad. Those frames are really special and they are made especially for them because one is made that says #1 mom and the other one says all about how great my Dad is. I also made my dad a frame of him holding me and me giving him a great big kiss so that he can put it right beside his bed so that he can see me whenever he wakes up and goes to sleep.
I also wanted to of course have some pictures as well so I made a whole album of all the pictures. I also had like two sets of pictures that were really cool because one of the two pictures was in color and the other was in black and white. One of the sets of the pictures was that I had one color picture of me giving my dad a kiss while the black and white was an even closer up picture of this. The other set of pictures was of Max and me. One was a color version of him kissing me and the black and white version was me kissing him. I decided to put them each in a spinning double-sided frame so that when you spun it, it would spin between the color and black and white version. I thought it would be a really cool idea!
Well… other than that… nothing else is really doing. I guess that sums everything up. I will keep you all in the loop of what happens and what the next step to the surgery is when I find out. Thanks again for everything that you have been doing. I just want to say how much I truly appreciate all the support and encouragement that you have been giving me. You will forever be in my heart.
Until next time.