Well, yesterday one of the Nuero surgeons came in to let me know that they will put Dawsons shunt in on Monday. This kinda suprised me it is a little soon. I will talk to Dr. Walker on Monday before they do it (Mallory has an appointment). I don't feel good about rushing things at all. I trust Dr. Walker and it will be good to get his point of view.
Mallory has been a little pill. She has cried a lot for the last two days. She still sleeps good so she stops then, but the only other time she has stopped is when Ryan talks to her on the phone, then she is all smiles. I think she really misses her daddy and wants her normal life back. I don't blame her.
We finally have a lead on what is up with Ryan. Years ago Ryan applied for Life Insurance and was turned down because he had too much protein in his urine (he'll love me for that) he went to a Nephrologist (kidney doc) and was told that he has IGA Nephropothy (Kidneys). We didn't know what it was but the Dr. told us that it was rare and it is nothing to worry about.
For the last couple of years, and especially the last year, Ryan has had a lot of different problems going on. He has almost constant sinus infections, and horrible headaches, among a lot more stuff. He has been to so many doctors lately and they all just bounce him around from specialist to specialist. It is so frustrating. Ryan still has to deal with the pain. I am such a wimp and tend to complain about the smallest pain. Ryan has a very high pain tolerance and doesn't complain unless it is unbearable. He has been told that the headaches are caused by taking Tylenol and other meds. So he tried not taking the only thing that helps and it is so hard on him. We have wanted forever to find out what was going on.
Today he went to a Nephrologist in Idaho. When he told the doctor everything that he had been experiencing for the last year the doctor told him that it was almost like he had just read that to him out of his text book (about IGA Nephropathy). Ryan will go and have a biopsy in 2 weeks in Boise. They will take a sample of some of his kidney and study it. He will have to be watched in the hospital for 8 hrs. Then he has to go straight home and stay down for 3 days. I guess this will be my chance to repay a small portion of what Ryan did for me on bed rest.
Ryan was allergic to dairy and wheat when he was young. The doctor said that by eating those things now it can and is damaging or hurting his kidneys and causing the headaches and sinus infection, etc. I guess we will now have to learn how to fix meals that don't include dairy or wheat (yikes) but that give him all the nutrients he needs that he will miss from those things. Kinda crazy!
It is so good to finally know the problem. Ryan now has a direction to work in. Hopefully we can get all over this so we can prolong any need for transplant. For now hopefully this will give Ryan a little bit of hope, that sometime soon he won't have to deal with all of the pain and annoyance this has been for him. We will let you know when we know more on him.
Mallory is finally sleeping and quiet. I am going to run upstairs and hold my boy. Love you all!!