Prayer warriors, we have been here two weeks. Things are on such a fast pace.
Early this afternoon (October 13, 2009) Aaron underwent his second MRI. He had one shortly before we left UCSF, but those images are not clear enough for the transplant surgeon, Dr. Lax, to map out the transplant. Aaron, also with being a hyperplasic left heart baby, has left atrial isomerism and heterotaxy and he is a single ventricle kid. His insides are all different than most congenital heart children.
For 4-years he has been walking around and he was very sick inside his medications and surgeries were helping him. We being here with Dr. Lax are the best thing that has happened to Aaron, he is one of only maybe a few that could do this transplant. He has done them before and he has done them before with success. Once Aaron has this transplant he will be more or less cured of his major heart problem and should be able to live a normal life.
Aaron will be listed in just a few days and he will be listed with status A1 that is the very top. When the doctor is off and not available to do surgery they are talking about putting Aaron on as status 7 that means he accrues time, but he will not be called if organ becomes available only because Dr. Lax is the only one of the transplant doctors that can do this. Luckily enough Dr. Lax is pretty much here 24 /7.
I think he is taking a couple days off next week, so Aaron will be status 7 for a couple days but that means they have faith that it could happen any moment once listed. All that is happening is very good they are taking such care with everything that is happening. God has put us here for a reason and put us into the hands of a very capable cardiac team. We will have Dr. Lax as his surgeon and Dr. Alejos and Dr. Greg Perens as his cardiologist team.
We will be discharged from the hospital maybe early next week can you believe it. We have been in the hospital since June, he will remain on his milrinome IV medication, and be assigned a home health care nurse that will check on us .
We will be nearby the hospital, their only fear is that he could go into tachycardia, but so far he has been stable the entire time. We are still in the process of trying to find housing we have a couple temporary situations. Nothing long term or permanent yet.
The doctors feel he would have a much better quality of life right know outside the hospital being here is so hard on him. He is only 4 so I have such a hard time rationalizing it all with him. He is also at his witts end with it all. He was in the ICU almost all of that time so he has had his vitals done every two hours and had bandages changed over and over again and now his dialysis.
God Loves the Little Children
The only way I think I have managed this far is with the love from all back at home and with the Love of God, when I think I cant do it anymore and I just want to take him away from all this I always pray and somehow God has been there each and every time. He shows himself in the love from so many at home and in the love and support from our family.
Aaron is scheduled to have his MRI this early afternoon and I spent most of the morning signing consents as well as listening to the doctors explain his odds and possible outcomes and hearing that regardless he had to do this. There is a small chance that since he is in kidney failure he could have a bad reaction to the dye that is used in this MRI and develop an auto immune disease.
So, being here alone I was very scarred and nervous. Before coffee or anything this morning I was given a letter from father Dismas, telling me to stay strong it was probably sent a week ago but did not arrive till this morning.
Then Aaron and I went to the playroom when we returned there was a card from father Dismas, sent on an entirely different date that arrived also fatefully today letting us know that our family at Holy Rosary is praying for a safe and sound return home.
That was not just chance — that was OUR GOD answering my prayers. These kind situations have happened on so many occasions throughout this whole ordeal. I was so sadden about being alone today and I was being told that I was not alone.
Rejoice in all you have not the things because they are just that things, rejoice in having God be with you when you need it most and even when you don’t realize it. I am suffering immensely but Our Lord over and over again will not let me suffer alone he is here with Aaron and I time and time again.
God Bless you all prayer Warriors and thank you for your continued support. We are just beginning to climb this mountain. We don’t know how long it will take but we can do it.
Posted: Saturday, October 17th, 2009