ONE STEP FORWARD/TWO STEPS BACK: THE WHOLE STORY

I am so thankful Hannah is here. It is just nice having her to visit with and she has been a great help. She went to the hospital one morning and let me sleep late. WOW!! The offer was there for other mornings as well, I just have a hard time not going. Hannah went to the grocery store while I stayed with Ken one day. I was so thankful, I had needed to go but the one I really like is a pretty good walk for me, but her legs are used to walking everywhere in Portland. I just wish her dad was doing better and more like himself. It has been especially hard for her - she is the BIGGEST DADDY'S GIRL EVER!!!!!!

Hannah has always been our very strong willed and opinionated child. At times that has been a source of frustration for me. This week at times I have been a source of frustration for her. She says I only give the good side of the picture here and that people do not know what specific things to pray about when I do that. I have not totally processed everything yet - to be honest it has been a very hard week.

Ken has been so lethargic this week. Some of the medications he is getting causes drowsiness, but this has been beyond that. He had been extremely nauseated and what they had been giving him for that was a little sedating. The nurse suctioned out his stomach and that has taken care of the nausea problem. Being lethargic has not changed. He has been back on the ventilator since late Monday night giving him a break and hoping he might be able to perk up a little bit but he has required more oxygen than he had been. Communicating is hard again - lip reading. Talk about frustrating! I asked the nurses to give him the pain medication that was not sedating as much as possible, but nothing has changed. His body is still full of fluid, some good progress has been made, but nowhere near enough. He is improving with bending his fingers and being able to move them more on his own but he still cannot lift his hands on his own. I continue to exercise his feet and legs as well as his hands and arms daily and then PT comes in and does more intense exercises. Ken is not yet strong enough for them to sit him up on the edge of the bed or do a standing test. The intent is to put him in the chair daily, but there have been a few days that was not the best thing to do.

My concern for a while has been Ken's will. I remind him all the time that he has to mentally stay in this game and fight. Everyone who walks in the room continues to tell him what progress he is making, but he does not see that. He seems to see no progress or going backwards, and I can understand that. I have put things up in the room to try and brighten it up. There are family pictures up there and the nurses continue to ask questions about his family and they can see Ken not in bed with tubes all over. When Cher was here she wrote some goals up on the white board: Go Home - Go Fishing - Go to Hawaii with Chip and Cher and above that is the picture of the very first time Ken held Jack. One of the aids writes him notes and she is always talking to him about the goals. I have shown him some pictures of Jack on the computer but he does not want to look at them. If you ask Ken something about Jack or say something about taking Jack fishing he turns his head away.

As always this is written at different sessions as time allows. The probable cause of the lethargic issue has now been found. Ken has a blood infection. It has happened since his last culture done on the twenty-first. The medical staff continues to tell me this is very common in this kind of situation. With him being on the immune suppressants he does not run a fever but it shows up in other functions of his body. Unfortunately, they had to remove all lines that had direct access to his blood and put in new ones. The lines they took out were the long term lines that when put in caused the situation of having to open his chest up to repair the source of bleeding. There is a chance those lines will have to be replaced in the chest area some time next week and I may have a very hard time signing the consent form. I'll have to cross that bridge later.

Hannah and I are sitting in the surgical waiting area. Without getting to technical, especially since I do not know the technical terminology, as you all well know, the surgeons are finding and dealing with the source of a long term problem. It has to do with keeping the proteins he receives from his nourishment inside the blood. There is a vicious circle going on with the fluid, the proteins, the nourishment he is receiving and the effort to remove that fluid. Once again that word BALANCE comes into the picture. It was thought that perhaps the problem had healed on its own, but that is not the case.

If all of that is not enough, there is another problem with Ken's intestines. When his stomach was suctioned and they got so much out, it led them to have a cat scan run. That revealed there is an area not allowing everything going in the tube to get through. The tube was placed not in his stomach but just past it. The fact so much was in his stomach showed just how much had backed up and not been absorbed into his body. They have stopped the feedings and they are giving his medications differently in an effort to let the intestines have a break and hopefully correct itself.

As I said earlier, this has been a very rough week. I spoke with one of the transplant nurses yesterday and she said the "BIG THREE" were working. HEART, LUNGS and BRAIN. If those three are working everything else is fixable and we are in the fixing stage because the BIG THREE are working great!!! It is just so very discouraging at times when you think about having to go through another "FIX IT" situation.

Hannah said I made everything seem too positive, maybe so. "So many times we get to the end of the waiting period and we do not know God any better than we did before." That was one of the last statements our pastor said in a sermon on WAITING. A friend of ours was discussing Ken's situation with a long time christian friend and was questioning why would God let this all happen after we had gotten to this point. She was told that there were no answers but all she had to know was that God loves Ken and God loves Bert. I don't want to get to the end of this waiting period and not know God any better than when I started this journey. If I believe God loves us then I have to believe He has our best interest at heart. I don't know what that is, but I pray I will continue to trust Him all the way through it.

Hannah wanted me to be more specific as to what the prayer needs are. At this time I would say: 1) The results of this surgery are positive, and that the healing from it will be quick and not slow down progress of getting stronger and out of bed. 2) There will not be a need to replace the lines in the chest. 3) The blood infection will continue to respond to the antibiotics and all of the other areas this has effected will be cleared up. 4) The kidneys will begin to show signs of functioning. 5) That wisdom will come regarding my concerns for the "real world".

As always THANK YOU for continuing to pray. For continuing to lift my spirits through love offerings, cards, packages, e-mails and visits from friends and family.