Lung Update #17 - Good News? Not Exactly. Challenge? - Definitely

This will be a long one, so either skim or get a cup of coffee. My God is at work and we are in need of seeing this work and we are still in need of your prayer. I will begin with the humor for the morning. Because it is raining and windy, I chose to wait on the shuttle that runs between the Lodge and the Clinical Center. While waiting, I engaged in a lovely chat with a man by the name of Ken (I didn't get his last name) who is here with his daughter Sandra Anglin. I could tell by his precious accent he was one of us - a Southerner - but, as to where, I was not sure. He actually lives in Lakeland, Florida. His daughter, Sandra, lives in Roanoke, Alabama, where he grew up as a child. She met her now husband during one of their visits to the grandparents. Ha. Anyway, pray for this family. Sandra is 39 with Colon Cancer and has been on and off chemo for 2 years. It is no longer working. She discovered some breakthrough research they were doing here at the NIH and the clinic warmingly accepted her to the protocol. They will be here a minimum of 3 weeks. Pray for this family, as I am sure it is difficult to watch your child suffer. The white blood cell research they are attempting with her is VERY similar to the exact same research they are doing with CGD (Jeremy's disease). One day, we, too, might be where Sandra and Ken are. Not today though.

So the funny part - I get to the hospital later than normal and find that Jeremy has already gone to CT for the morning. I also found, to my great distress, one of the walls in his room splattered with blood. Alarmed, I go to the nurse's station to talk with his nurse. I asked her if he was ok and if she could explain what had happened. She looked at me with shock and said she KNEW NOTHING. What? You're his nurse! Fear of great pain overwhelm me as I go to all scenarios - a chest tube got yanked out or his local pain pump got yanked out and the residue from the tubing went everywhere. So, the nurse gets a custodian to come and clean the wall with a disinfectant. I begin acting like a crime scene investigator (yet another occupation I might be good at). The marking on the wall begin at shoulder level, and the amount was not a voluminous as a chest tube, so I assume that the local anesthetic, but I am still concerned that it was just awful. The bulb for the local anesthetic is in the hazardous garbage, so I feel conclusive, and am now off to the source.

I find my precious husband down in the CT waiting area in a wheel chair hunched over sleeping. I kiss him on the head and he awakens and looks at me in somewhat of a daze. I asked him if he was OK and if he remembered what happened. NO! Nobody knows what happened. I asked him if they removed the pump or if it fell out. They removed it. WTC? So, I will now wait to ask the surgeon, who removed the tubing. I am now guessing they removed the tubing and carelessly flung it on the wall as they were collecting it for disposal. Absolutely insane. My friend, Kaci, said this could be the Halloween episode of our sitcom life.

Jeremy had a CT performed over his chest and stomach region. The surgeon alluded that they would remove one of the chest tubes this morning and possibly reposition the other one so that it relocates to drain more fluid. Jeremy has remained fever free for 48 hours and has remained without vomiting for 24 hours. So these are huge praises and reason enough to get excited. He has also NOT HAD THE HICCUPS THIS MORNING! Unbelievable. Keep praying! I am astounded.

Here is the not so great news. No less than 12 doctors and nurse practitioners entered our room this morning to give us this news, all with solemn faces, which quickly prepared me into a state of preparedness. The fluid is not draining properly according to the CT. So, instead of removing the 2 chest tubes, they will now insert ANOTHER tube at a strategic location to remove fluid that is stubbornly roosting in his thoracic cavity. Why? Well, there are many theories. When they aggravated the infection during the surgery, the most likely scattered small cells of it in the thoracic cavity. This debris is still trying to be harnessed and captured by his poor little body, so the body is still producing fluid to push it out. When you have a cut and that clear/yellowy fluid surfaces to cause a scab, that is exactly what is happening around his lungs. Because the fluid is there, his left lung is still not expanding to full capacity and they want it to do so before the remove a tube. Jeremy is incredibly discouraged. He asked for an estimate of our stay and they said possibly a week. He has had a small breakdown and expressed his deep desire to go home and to see the girls. So pray for him and his stamina today. This was extremely defeating for him. For me, it was a challenge. I am now hourly watching the clock so that we are doing the breathing treatments as instructed. When he returns from the procedure to insert the new tube, and has come off of the anesthesia, he will eat and we will walk. Eating gives him calories and energy. Walking gives him strength and forces his lungs to expand. Pray for us as we fight through this together. I can do this and so can he, but our marriage will need your prayer as I am sure there will be times where he will want to yell at me. I can be sensitive sometimes and I need God to remind me that Jeremy is not yelling at me. He is yelling at the infection that has caused me to treat him this way.

We prayed together after the team left and begged God to be SO BIG to Jeremy today. Here is how you can join us in this prayer. Pray for Jeremy to continue to remain fever free. You have gotten him this far and we need you to continue to petition for this need. Pray that HICCUPS stay away. I cannot even begin to tell you how I am welling up with tears right now because my husband does not have the HICCUPS. Absurd, I know, but WOW! God is good. Pray for the nausea to stay away, even after they sedate him for the procedure. That typically causes nausea and I NEED HIM TO EAT. Even if he only eats corn pops and gatorade, I need him to eat. Pray that we can walk at least 2 times later today. My goal was for him to walk more today and to get his hair washed. I am determined to meet the goal. Pray for his stamina and endurance. He needs you right now because he is so discouraged and defeated. This mentality will not get him well. Help me help him. The doctor also mentioned that they might can move him to a private room to assist with the recovery process. Pray that they can. The doctors all said that each day Jeremy is improving. Now, he is struggling because he has finally hit a spell of antsyness. I reminded him this morning, that prior to yesterday, the "fight" inside of him was dismal. So we can only go forward.

Later this afternoon, I will send out an email explaining CGD. If you are among those who already understand the disease, just skip it. There have been several of you, though, who have asked other questions about it and how it works and exactly how he is different. I will try to explain it as best I can. For now, this update is long enough. If you want to do more than just email encouragement, send him cards and notes through mail. He loved getting the package from his mom and has almost finished his Sports Illustrated that she sent. He loves other sporting magazines (especially college football projection stuff). He loves puzzles (sodoku and crossword) He loves mindless and worthless facts and information, so books with that are great. We love news magazines and Christian magazines. So if you see something and think of him, send it. His new room number is 3-2664. If you lost the previous email I sent with mailing instructions, let me know and I will resend it.

As for me, I am still seeing God at work. I got my coffee this morning and was reminded of someone else who is struggling in life. I was reminded that I have hope and it is important that I spread it. Oh, and one more thing. One of the doctors on the team that came around with us, came back around after rounds. Her name is Dr. De Ravin and she heard that Jeremy was a pastor. She wanted to let him know that she, too, was a believer and that God's plan was greater than our plan. I cried and was touched. He reached out to us through someone here - not very common. He is Big. I pray He reaches out to you today too!