Tuesday

So....it has been a long day. Joshua started out really well. He lost a lot of blood and they replaced it as he lost it. He was warm, pink and actively looking around the room this morning. As the day progressed he managed to get a temp of 39.(something), collapsed his left lung, had to get another left chest tube placed, was put on nitric, had blood pressure issues and his arms and legs turned ice cold. :(
About an hour ago the decision was made that they could not let him go on as he was because he was not doing so hot. They all got together....as they have several times through the day and decided that he needed to go back to the OR. Dr McMullen is stepping in for Dr Cohen as he has fallen ill. I know he is in good hands but it is not a familiar face.....well not as familiar.
The plan as it stands: to open up his chest and take a look around. The thought is that maybe by opening it the heart will have some released pressure and will be able to work a little better. He will come out of the OR with an open chest this time around. In the last several hours he has had LITERS of fluid injected to help with blood pressure issues. He is severely swollen. I was told to be prepared for him to go onto ECMO. This is much like the heart bi pass machines that are used in the OR. It will be his heart and lungs while his little body gets some much needed rest. Please pray that all goes smoothly for Joshua over the next few days. I must say that I am TERRIFIED. As I know that this is a huge effort to help him, I have been in this CICU too long and have seen more unfavorable outcomes than positive. Not that this is always a bad thing but it has been a scary thing for me to face. Please pray that this is just what his body needs to recoup.
And of course.....another sign that God is at work: (like we didn't already know it) The test on his antibodies shows that he has had no major (let me repeat NO MAJOR) antibody attacks!! We were most definite that this was going to be his MAJOR obstacle and God has spared us that....even if just for now. He will not need immediate plasma replacement therapy. PRAISE THE LORD. Now this can change of course, but to not have to worry about this at this point is a miracle.
Thanks for following up. I will try and call many of you but please know many people have been trying to reach me and my cell phone battery is crap. :( I am not loving it right now. I am thinking of you all and appreciate ALL the support that each of you has given. Know that I don't think that I could be as strong with out your prayers and contact. I know that many of you have questions and please feel free to keep trying to get through or post them as a comment and I can reply on the board. This is very scary for all of us and I know each of you has a vested interest and love for this awesome boy.

Much love,
Leah for the family