Bitter Sweet

As I sit here at Georgetown University Hospital and reflect on the last 14 days they have been crazy. We are in our third hospital from Obici, to MCV to Georgetown.  We are in our 4th Hotel.  But God's hand has been at work all around us all the time.  There are so many things He has done for us.  Jesse is still fighting an uphill battle for his complete healing.  But he has the very best chance available.  God has provided for our family financially. Airfares, hotels, and food have been taken care of so that we could be here to support Jesse during this critical time.

When I arrived on December 6th Jesse was on his 3 day of steroids and he was not responding his bilirubin levels were very high.  They stayed very high but MCV decided they would continue with the steroids while they looked for an alternative treatment.  One of the complications with my brothers situation was that he had a chronic clot in his main portal vein going in and out of his liver.  Chronic means it has been there for a long time it formed slowly over time so it was embedded there was nothing we could do to dissolve it or remove it.  The Hepatology team at MCV had told us there was a trial study going on at the University of Virginia. It was called ELAD( Extracorporeal liver assist device) Basically it is a machine that has live liver cells and does the work the liver is supposed to do. It really is amazing the way God has made the body and cells. The liver is one of the most regenerative organs in the body when a live donor gives part of their liver to someone they take 2/3 of the liver for the donor and your liver as the live donor grows back to full size. The ELAD machine will give his liver a break and removes the toxins in his blood giving his liver the best chance to naturally heal itself or bridge him until he is eligible for transplant. This device is not yet approved by the FDA it has been through several different test trials and is now in the last phase before going for the FDA approval.  Well all of that to say when we finally heard back from UVA we were told they were not yet participating in the study.  We were crushed we had no other choice than to allow Jesse to be stabilized as much as he could and then go home and hope the 25 % percent chance of survival was enough and that God would do a miracle. The way God does miracles can be seen in many forms.  On the same day they told us UVA was not participating yet we asked the Doctors to check anywhere else that we could be a part of the ELAD trials.  We heard back from Georgetown immediately and they were very interested so they put in for him to be transferred to Georgetown from MCV.  My mom rode with him on the ambulance then the rest of the family followed in a caravan the next day.  When we arrived we were given a much different impression. He was not accepted to be in the study and even if he was accepted it would be random whether he would be on the machine or whether he would be on general care which would be steroids again.

So we prayed we prayed a lot . Then we were told that the clot would exclude him from the study completely but they wanted to check and do their own ultrasound at Georgetown not just accept the one from another hospital. So they did their ultrasound and the clot was GONE! We all saw it on the ultrasound but it was gone and this clot was huge. It was not the kind of clot that moves it was embedded in his portal vein.  But if the clot would have been there then he would have not been eligible for the ELAD.  God removed it! There is no other explanation.  Later on the same day after the good news Jesse had a short episode where he forgot where he was and all that had been happening because his ammonia levels were high we think he was in the beginning stages of hepatic ensefolopothy   which affect your brain because your liver is not filtering and excreting the ammonia well.  Within a few minutes he remembered everything and then his ammonia levels came down drastically over the next 24 hours.  This was Saturday and we still had not heard which group he would be placed in for the study because it is randomized by a computer.  We waited and waited and waited for what seemed like days but it was only hours.  Then we go the call that he would be on the machine random? Nothing is random with our God!  They moved Jesse to the ICU Sunday night and started him on the ELAD Monday morning.  He has been on the machine for 24 hours. I can only imagine how he feels there is no way for me to truly understand.  I keep telling him this could be his second chance and I want so badly for him to do well, but only he is in control of it.

We have had many talks about Jesus and his sacrifice and what it means. Jesse knows the truth.  Jesse has seen God's hand at work, we all have in this situation.  We understand that this is not over Jesse has 4 more days on the ELAD machine and then we will know its affects.  We know the road is hard and long but we trust the Lord for His plan and His will.  We have done all we possibly can and now we have no other choice but to wait and pray.  I believe God is going to heal my brother through this one way or another but I trust Him in whatever His plan is.

Leaving them now is bitter sweet I miss my wife and kids so much I am going crazy but it is sad to leave my brother my mother and my other siblings during a time like this.  God has used this situation to teach me many things about my faith and my unconditional love for my family we always have each others back.  We are supposed to!

Most of all I have to say thanks to my amazing wife for releasing me to be able to come and take care of all the kids by herself.  I love you babe and I can't wait to hold you again in about 36 hours.Thanks so much for everyone's prayers and support please keep the prayers coming the road is long and hard but Jesse has promised us not to quit.  To God be all the glory, honor, and praise!