Where did the time go!

O.K. Wow I am a very bad blogger! I am very sorry that I haven't blogged in a long time. Tristan still get his infusions every 28 days like clock work. Those won't change ever. For awhile it's been kinda crazy on my end. Tristan for awhile has had doctors appts every week and some times twice a week. This is what we have found out so far.

Heart= Many of you have read we are trying to find out what has been the cause of Tristan's chest pains. He has them every day. So they thought it was a heart issues. After 9 months they finally ruled out any heart conditions. THANK YOU GOD . They said is heart is healthy and maybe it was lungs or the neurological condition side of things. They also sending us to LPIDS clinic because his cholesterol is to high .

LIPIDS= The Lipid's doctors (another type of heart & lung doctors) Boy that was a very long day (8-9hr appt) So what happens at these appts for that long. We see the doctor and they ran some test and then we meet with doctors and dietitian. I am very happy to report that the dietitian said they way I cook and the ingredients I use was some of the best she has seen in a diet in a long time.(I had to write out what products we have and take in a diet log of what we eat) They only thing she told me is maybe we should add a little more fish into our diet. So his cholesterol issues are hereditary. Did you know children can get that kinda problem so early in life. I sure didn't and they make medication for it to. They decided that Tristan didn't need medication just yet. Because they think that his other current issues with his kidneys and lungs may be playing a part. They also ordered a exercise stress test to see if chest pains would show up and how his lungs are working . (he has Asthma to ) They also said he can only have 300mg of Cholesterol a day in his diet.

Urology= One day Tristan woke up and said it hurt to urinate. So I made an appt with his regular pediatrician. This is was the day before infusion too. I was worried about a kidney infection. Mind you I am paranoid when it comes to his kidney's because it is the only dangerous side affect to his infusions is kidney (renal) failure. Pediatrician tested him say he's clear but his urethra (penis hole) closing . Then he says usually it because of skin growth. Except Tristan doesn't have that problem visible. So we get sent to Urology specialist. So we went through lots of testing and many appts. We found out a couple of things . First was that he to didn't know why his hole has closed to the side of thread. We will be having Surgery On March 22 nd to open the hole back to normal size and to find out why it was closing since it wasn't a skin issues. Second we found out his sodium & calcium in his urine is extremely to high. Which means something wrong in the Kidney area . Just WHAT I DID NOT WANT TO HEAR!

Renal=(kidneys) So we see the kidney specialist and have more test. By this time I feel for my son because he's like a human pin cushion. So this doctor tells us Tristan kidneys aren't filtering properly. HUH? Well his sodium and calcium isn't filtering through at all. Which gives him to high levels if left untreated it can cause stones or worse Renal Failure. So the doctor put him on a very strict diet. Less then 2 grams of salt a day. Not to mention he has other diet restrictions from the Lipids clinic. So his new diet is less the 2grams of salt a day , no more then 300mg of Cholesterol a day , Bump up his potassium intake and Calcium intake. This all makes for a very hard diet especially for a 8 year old. So my whole entire house is on his diet. We go back and have more test done in May/June to see how things are . He also has slight case of reflux of the kidneys .

Stress Test== So we learned that Tristan sits on the verge of having activity/exercise induced asthma. He already has Asthma and he always had the type where he just stop breathing . He has never wheezed or coughed before an attack he just drops from not being able to breath. I call that the scary type of Asthma. SO now with the activity and exercise asthma we know why. His lung just shut down . So they have said he could be developing lung disease. Which most of the kids who get treatment with Tristan have already been diagnosed with lung disease . Since he is on the verge of it they want to try to prevent it. The stress test was very hard for Tristan to do. So they have instructed us to buy a Treadmill and Tristan must walk on it 1 mile in a program that they design (meaning the treadmills has to be able to be programed and it has to also incline and decline by it self.) . So this type of treadmill is expensive the start at about 2,000 and go up. Which is money I don't have laying around. God will provide so I trust. They hope if he follows there program that his lung function will improve and not continue to go south. Why can't he just walk/run outside you may be asking? Well simple they don't want him to because his medication to bring him out of a Asthma attack is a breathing machine (nebulaizer) which needs electricity. They did this in a test run at the doctors office and in about 20 mins worth of walking he had to have 5 treatments and his oxygen levels at the time even after treatment were only 80 percent. So I have to have all things ready to use when he does this walking plan.

Tristan is definitely a unique child . Not having an immune system is always throwing us a curve ball sometimes several at time. All you can do is breath and take one day at a time. I also have to home school Tristan due to condition. Some days are rough others are good. Tristan also has muscle and joint weakness . I thank God for all the people that donate blood and plasma ! I would like to thank all you donors of plasma and blood. You don't think when your donating that your are saving a persons life you think I will be saving someone in accident or so forth that just need it once. With out you donors I would not have a son! Thank you very much there isn't enough Thank yous in the world to Thank you enough.

I will try to keep posting more often .
God bless you all!