Doctors Report- Sorry So Late!!!

Sorry this has taken me so long. I know I let everyone down :) I literally started at like 11AM this morning, and stuff has come up off and on throughout the day. Phil was stable last night. I was in his room all morning talking with various doctors. Here is the scoop for today. Sorry it has taken me a little while (OK long while) to get around to posting.

Acutely, he is doing better. They are pretty sure he had an infection over the weekend, and that is what made him septic (bacteria in blood that makes your blood pressure drop and cause other issues). They still have not localized the infection. So far, the cultures are negative, but sometimes it can take a few days for bacteria to grow. They are continuing the antibiotic they started yesterday. His white blood cell count went down which indicates the infection is improving. They think the bump in his liver tests yesterday was because of the infection. They changed out all of his lines yesterday, and think they may have been the source of infection. He is now off of one blood pressure medication, and remains on one blood pressure medication. We would like for him to be off of this medication and be able to keep his blood pressure stable on his own. Pray that his body would be able to maintain his blood pressure on its own.

Long term, we still have issues with his lungs. I spoke extensively with Dr. Osafu, lung doctor, this morning. They have pretty much ruled out all other causes of what is going on with his lungs, and are confident that his lungs issues are all caused by the shunting in his lungs from the liver disease that he had prior to his transplant. This is known as Hepatopulmonary Syndrome. It occurs in 10-30% of patients with cirrhosis, and the only cure usually is liver transplant, and it is variable how long after a transplant it takes for the shunting to reverse, one month to several months. We weren't even aware that Phil had officially been diagnosed with this because they just started working him up for it in January.

Bare with me as I try to explain Hepatopulmonary Syndrome again. Some people with cirrhosis develop this syndrome and it is still not known fully by medical experts what causes it, but this is the proposed theory. In your lungs, you have these air sacks called alveoli. When you take a breath, this is where the oxygen goes to. Around the alveloli, you have fingers around them which are little blood vessels. Blood usually passes by the alveoli, and oxygen diffuses across the wall of the alveoli into the blood stream. From here, the blood carries oxygen to the rest of your body (other organs, etc). In cirrhosis, it is proposed that in some people a substance is produced in excess that causes the blood vessels around the alveoli to dilate (get bigger). When this happens blood passes by the alveoli without picking up oxygen. The reason they know this is happening to Phil is because of his blood gas that they measure 1-2 times a day. Usually when there is not shunting and you give someone 100% oxygen, their paO2 is 300. When there is shunting like there is in Phil, even with the most oxygen, his paO2 is only 62 today. They will not go down on his amount of oxygen until his paO2 starts to improve. We are supposed to see an ENT doctor (Ear, Nose, and Throat) this afternoon because they want to put a trach in Phil probably on Wednesday. They will decide if they will take him to the OR for this or if they will do it at the bedside. There are no medications proven to help reverse the shunting. There have been several studies done on rats and people prior to transplantation, and the doctors are studying these to see if they want to try any of these medicines on Phil. I will also be talking to some physicians at Baylor Dallas and at my medical school to see if they have any additional input. No one really knows what to do or how long it could take to reverse. Once again, as we have prayed Phil is outside of their medical box, and they do not know what to do. They aren't convinced that even a new liver would help him as the one he has now is functioning pretty well. Also, they can't take him to surgery anyways because of his lungs. Please pray that God would reverse the shunt in his lungs. We need desperately for God to touch his lungs so that they can properly carry the oxygen to the rest of his body while breathing room air. Pray that the blood vessels in his lungs would shrink back to normal size. Pray for wisdom/discernment/direction for the doctors as to if they should give him some of these experimental medications.

His liver is still doing well. Praise God for continuing to heal his liver. His INR is back down to 1.3 today and his bilirubin is back down to 3.6. This is very encouraging. They think the increase in his liver tests over the weekend was due to the infection. This is a miracle in itself that his liver is functioning like it is. Praise God for answering our prayers. Continue to pray for the clotting function of the liver to normalize. Normal INR is 1.0 or less and normal bilirubin is 1.9 or less. We must not overlook what God has done with this liver. It was on its way to being completely dead, and God intervened and is healing it.

His kidneys are still hanging in there and making some urine. They are going to keep him on the dialysis so that his body can focus all of its energy on the lungs. Pray for continued healing of his kidneys and that they can filter the blood.

They have started something new today which is exciting. They are going to be waking him up every afternoon for 15 minutes or so (then back to sleep). One challenge is to not stimulate him too much. Today was so great. He responded to Beth, Grandma, and Justin. I was gone. He was nodding his head, opening his eyes wide, laughing (yes that is right, he was laughing at Justin), and squeezing their hands. It was so awesome for them to see. Justin shared with his dad all the great things God is doing in peoples' lives through this journey, and Phil opened his eyes wide and nodded yes. You could see the excitement in him. Justin talked about their matching beards and showed Phil the picture of the kids with the robot crate that was dedicated to him. His eyes got real big. We thank God for this ray of sunshine again today.

We just heard from the nurse that he will be having his trach surgery Wednesday morning at 10:00AM. Tammy will be back again tomorrow. She is awesome. She asked us to go and get Phil an electric razor because she wants to shave him before his surgery. She said hair gets in the way of the trach. She said really she is just OCD (obsessive compulsive disorder).

Tomorrow they wil be giving him another round of the antirejection drip. Pray that he won't have a reaction to it. It can cause low blood pressure as well as flu-like symptoms. Pray that the medication will do its job without causing side effects.

Please pray for Jesse who had part of his leg amputated today. Beth and Grandma spoke to his family.

Demetra, the 37 year old with a stroke, is responding better and they hope to take her off the ventilator by Wednesday. She still can't speak and has residual paralysis. Continue to pray for her continued recovery.

We continue to thank you for your continued prayers, support, and encouragement. As we all know there is something greater going on through this, pray for the greater purpose in all of this and what God wants to show you individually. Let's really press into God and ask Him if there is anything He want to show us or break us of. Spend some time writing down what God is teaching you or has shown you through this and eventually we would like to share it with Phil- maybe compile a book of letters from people or have a big celebration time where people share. Will be better tomorrow about my posting!!!