Lung Update - #1: Glad We Cracked Him Open

Jeremy made it through surgery and is in IMC (Intermediate Care Unit). It is basically an ICU of a different level. He will be in this area for at least 24 hours. I have spoken with him and he is alert and I actually think he will remember seeing me this time. We joke that the last time we visited him in this state, I had to repeat myself often because each visit was brand new to him. (For laughs, insert thought of Mr. Short Term Memory Guy skit from Saturday Night Live)

I am sure that many of you have heard through phone or other emails the results from the surgery. I will also be updating the blog shortly because Jeremy was able to relay that information to me and I can now access it appropriately. The surgery took roughly 8 hours. The estimate was 4. Yes, you should think right now - "wow, what happened?"

The doctor got into the area with the scope and was unable to get the full spectrum of the infection and decided that it would be in Jeremy's best interest to go ahead and open him up so they could actually see what they were dealing with. We are so grateful that he made this decision because what he found was a very complicated situation. The infection had spread and had caused the tissue that was in and around the area to "matte" up and in so doing had caused the lung, heart, and diaphragm to all be connected in a very tangled mess. The surgeon had to first begin removing and separating the tissue and that involved some very intensive and delicate incisions. He took a part of the pericardium (outer protective layer of the heart) off that had fungal tissue embedded on it. He took a part of the diaphragm that also had fungal tissue embedded on it. He also took the mass from the lung which had also spread into the lower lobe whereas it had originally only been in the upper lobe of the left lung. However, as intricate and massive as this was, the surgeon felt that he was able to get ALL of the infection along with the small mass he had identified at the base of the lung as well. So the PRAISE is that he got it all. The prayer is that all of Jeremy's organs will heal and his incision will heal. He did lose a nerve. It is called the frontic nerve and it connects the heart to the diaphragm and assists in regulating the maneuvering of the diaphragm during breathing. The infection had surrounded this nerve and there was no way to salvage it. The surgeon and doctor both said this would not be devastating for Jeremy. It would only be problematic if he were an olympic athlete that was under intense training. He will still be able to play sports, so those of you who allow him to play basketball, he will rejoin you next season. :)

He is currently recovering with lots of pain medication both local, and general. The nurse in the IMC spoke as if she hoped to get him up in the morning and sitting in a chair. His incision was in the back just below the shoulder blade. They had to spread his ribs, but they did not have one crack, so that is good. The overall size of the mass was roughly the size of a baseball (originally we were looking at a golfball). Jeremy still has his PICC line in. Both the surgeon and Dr. Malech want to keep that accessible until we know exactly what this was that we removed from him. They will continue with antifungal medication and obviously he will be on heavy antibiotics for an extensive period of time to prevent infection at the site of incision on all layers. So, he is hooked up to a lot of machinery right now. He is already starting with breathing treatments to regain strength in the lungs. Pray for him as he continues to push this. His main complaint with pain at this moment is his chest, not the incision site. Pray that he does not have any need to cough tonight or for the next few weeks. That will hurt tremendously.

We praise the Lord for the NIH and their willingness to seek to find answers for this disease and many others. Today, alone we have met people who are family members of people plagued with numerous other ailments such as cancer, and brittle bone disease. Our road is tough, but I can't imagine having a 7 year old who has already broken his femur 4 times this year alone. God reminds us of our struggles and our blessings. Wow. We praise the Lord for Dr. Malech who shared with our family tonight as he stayed late to consult with us post surgery that Jeremy is like a part of his family as well and that found him to be quite a special person. That means a lot to us. His job is to researc this illness, so he doesn't have to become involved in the lives of his patients, but he does. Thank you Lord. He spoke of the future and a time when we will see even better opportunities for Jeremy in aiding and assisting him in coping with this disease. He affirmed us again, that this is still not the time to put Jeremy through a trial of dealing with one of the new research studies where they are conducting gene therapy to try to encourage the body of a CGD patient to correct it's flaw. Who knows when, or if, this time will come, but Dr. Malech is looking forward to a day when we will see a new Jeremy. He commented on how we have progressed medically to a place where we could postpone the trauma of surgery by giving these IV meds. Two years ago, this worked with Jeremy. However, this time, as we now obviously see, surgery was the best option.

Jeremy will have two drainage tubes in for roughly 4 days to relieve the fluid in and around the lung area. He will be here for 4-7 days recovering from surgery. After release from the surgeon, we will then be waiting release from Dr. Malech, his regular research doctor as well. Dr. Malech seemed hopeful. I will be your contact person for the next 2 days. If you really need to speak with Jeremy, you can call and I will see if he is up for it, but hopefully I, or any of the family, or church family, will be glad to answer or assist you during the next few days. As for the rest of the recovery, Jeremy will be out of commission for moving or lifting ANYTHING FOR AT LEAST 6-8 WEEKS. Help me watch him as I will not be with him at all times. Lisa, when he leaves the office, I need you to remind him, "don't LIFT anything!" :) I am sure there are tons of mommies out there to help me watch him.

Your friend Jeremy in a nut shell: as we talked about where we are two nights ago and what will come of this, he said through tears that he has become more aware that this disease will one day take his life (I don't necessarily know that), but if God can be glorified by he being sick on a regular basis, so be it. Pray for our family as we continue to accept the calling on our lives - whatever it may be.

Pray for major changes we will need to make in our lifestyles as we return. Pray for Emma as she is all the more inquisitive on this trip seeing as how she is older and far more observant. Pray for wisdom as I mother her and protect her and yet inform her. There are many things that she does need to know, and yet there are many fears that she needs to be able to be sheltered from. She is very observant and smart and sometimes too smart. I spent about 20 minutes on the airplane assuring her that she would not have to wear the yellow mask unless it was an emergency and if it were an emergency she MUST wear the mask in order to breath"good" air. She did not want to wear the "yellow mask." :)