Sunday, June 17, 2012

and now it's the blood pressure issues

We have known for some time now that Tynan's kidneys are not functioning as they should be.  This would probably be a combination of several things.  Radiation, chemo and various medications would be the top three.  Of course, bad kidneys gives us high blood pressure.  Tynan was put on blood pressure medication while we were in Florida, for his Make-A-Wish trip to Disney.  For the most part, his blood pressure has been under control; however, when we started agressive anti-fungal medication(IV), it got worse.  His blood pressure has been on a roller coaster ever since.

We came to the ER last night because he was having severe tummy pain.  Thankfully it was just constipation.  While that has been taken care of, we were admitted because of his blood pressure.  It is still running high but is getting better. 

We will continue the blood pressure patch but will add another medication by mouth.  We have also learned today that because of the type of fungus he had he will have to continue the anti-fungal medication(IV) for about 3 months; 7 days a week; and slowly be taken off of it. During this time his kidney function will be monitored closley.  They are considering giving him another PICC line to help us keep him well hydrated during these months.  When we are done with that we will continue a less agressive anti-fungal by mouth for about a year. 

And all of this rests on the results of the bone marrow biopsy that we are shooting for tomorrow. We have been put on the schedule as a backup, so keep your fingers crossed and pray that get a slot.

IF the results come back with "miracle" written all over them; then the BMT/Oncology teams will have to decide how to proceed.  Initially, the thought was to take more T-Cells from Sykora and tranfuse Tynan the same day; however IF the donor cells, already in the marrow, were stimulated by the fungus, there is a chance that "fresh" T-Cells could suppress the currently active cells.  It is possible that we should just let God finish, in his own time, what he's started with Tynan's little miracle body. 

On a good note, the concerns we had regarding new cells causing some type of reaction, have been put to rest.  So that means that we are on schedule for making it to the benefit in Premont this coming weekend, and having Tynan make his appearance in appreciation of the continued support and prayers.

There are a few people out there that don't know if they should believe; in heaven, or God, or miracles.  Their faith has been tried, and they have let their anger get the best of them.  People that say, how can there be a God, if this is happening to so many good kids?  I can't say that I have never been angry, or have never asked why, but I have never given up on my God and my faith.  My pain came from having enough faith to know that it's not what I want, it's what God wants; so matter how hard I pray for what I want, I know God will give me what I need or what I can handle.  But I also have enough faith to ask for the ultimate miracle, and strength, and the ability to see Tynan's purpose clearly.  As my husband wrote, Tynan's purpose was to show us all LOVE. Love for each other, for our children, for our communities, and for strangers, with each and everyone taking something different from our journey.  And even though the doctors have "isnstructed" us to "keep your emotions under control, until the results are back." I know that Tynan made this journey to show those who wonder and question, THERE IS A GOD AND HE IS WONDERFUL AND POWERFUL AND HE CAN HEAL.  Seek him and keep him close and your faith strong, and he will show you the way in all you do.  See his many miracles, in Tynan.

We have a long road ahead of us still, but everything will be alright!!!!! 
Let's all P.U.S.H. together!!!
(Pray Until Something Happens)

God Bless our Crusaders!!!!


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