Well, I told you all that I would update sooner than I have. Sorry about that, life always throws you curve balls and Im now just getting around to it. It is hard for me to post, I get very emotional and it gets my mind going and thinking to much! My heart is so full today, so I guess that means this needed to be done today.
Talan has had both of his infusions, and yes it went well while he was receiving them. The results of the infusion can take up to 6 months to see what it will do for him. But watching him get it was scary, Im not going to lie. Some of the reactions he could have had were either minimal or none at all. One in particular is the breathing. He had a little issue with feeling some heaviness in his chest and seemed a little labored breathing. His oxygen dropped and so did his blood pressure and then the blood pressure spiked. But just as all that started to happen, little tender mercies happened and he was able to pull out of them. I could go into detail, but as I get talking it just doesnt make any sense to all of you. This is when Stan needs to step in and help me write this. Ha ha.... he has a way with words that I cannot do.
When receiving this medicine the nurses administer certain drugs just before the infusion starts, this is so he wont have severe or any reactions to the medicine. One of them is a steroid. Talan has been told to stay away from any form of steroid because of his endocrine problems. One of them being his cortisol levels. Ok, so I know most of you do not know what cortisol is, but it practically runs our bodies. This is kind of like our fight or flight adrenaline. Cortisol causes us to wake up and go to sleep. IF your body produces to much cortisol it can cause you to stroke and cause death, or it can get suppressed by steroids and cause you to have very little. Too little can cause death to. Talans cortisol levels have always fluctuated more on the little side than too much. This is why it is scary for him to have steroids.
At this point, Tal has had a really bad week or so. He was doing pretty good with bursts of energy after the infusions. I think partly that was due to the steroid given him. Its a win and lose situation. Steroids can help him with his disease because it is also a inflammatory disease. But bad because of the endocrine system, and shutting it down. He has been sleeping a lot the past 3-5 days. His pain is out of control, and just cant seem to find any energy. Which in my terms, I think it has to do with the coritsol, or is he going through what we call "one of his cycles"? I sometimes wonder why I have to know so much about all of this? But if I didnt know, I would not know the waring signs and how to try to help. Its times like this that I wonder just how many days are left numbered?
There is no way of knowing just what is being affected inside of him, sclerosing is a hard one to detect, maybe the Lord doesnt want us to know. All I can say is what an inspiration he is to all of us, and having to endure such a trial. Thank you all for your thoughts and prayers. We so appreciate all that you do for him and us, even if it is just a hello! We all have our trials to bare and I hope those of you that are also suffering can find peace and comfort also! May God bless us all! We love you all!!!
