I've decided to set up a blog to help keep everyone updated on Lynn's progress. I want to thank everyone for their prayers and kind thoughts. Since I haven't always been able to answer each of your calls and texts, you can get updates on the blog. Please feel free to comment as I will be sharing this blog with Lynn as he recovers.

Also, posts before March 28 will say they were posted by my daughter because we set up the blog under her email address.

Friday, April 30, 2010

I wanted to thank everyone who took part in the fasting and prayer yesterday on Lynn's behalf. Lynn had a good day yesterday. He had his eyes wide open for about 5 hours straight yesterday and was looking around the room and doing some tracking (following the movement of an object). Today he is a bit sleepier as it was his shower day and that tends to wear him out. Yesterday I felt more at peace about Lynn's condition than I have for a very long time. I am convinced now that he is going to be OK, it will just be in his and Heavenly Father's timeframe. Last night I attended the temple with my sister-in-law's ward and the feeling of peace stayed with me. For all of you who sometimes get discouraged like me, remember that faith preceeds the miracle. A good friend of mine loaned me a book to read that has really helped put my faith in perspective. It is called Drawing on the Powers of Heaven and it is incredible. I read it in one day, the same day she gave it to me. It really made me realize that even though I thought I was exercising great faith, I have not been doing all I could to let the Lord know how much faith I have. I encourage all of you to read it. It is one of those books that you want to read and re-read so you will want to buy it. Thanks again to all of you who have joined with us in prayer and fasting. The power of collective prayer is great.

Tuesday, April 27, 2010

Today I finally got respiratory to agree to downsize Lynn's trach. As I suspected, he tolerated it just fine. Now in another week or so, I will try to get them to plug it and let Lynn prove to them that he can breathe on his own. He has already demonstrated that when speech came last week. We deflated the cuff and plugged the trach for 5 minutes, and he was breathing just fine with no decline in his O2 saturations. My biggest challenge right now is that the insurance company is not satisfied with his progress and is wanting to know whether or not we are discharging or I am going to selfpay the rest of his stay. So I am now battling with them. Even though they agreed to pay 100% for 60 days, it turns out that if he is not making satisfactory progress, they can stop at any time. I think that's why I was finally able to get respiratory to agree to downsizing. I have requested progress reports from his neurologists in Salt Lake since his doctor at South Davis is not giving much progress in his reports. Of course, he stops in once in a while (I haven't seen him for 2 weeks) and says "Hello Mr. Kraaima" and when Lynn doesn't answer he says that there is no progress. He needs to talk to the nurses and aids who care for him who can report that he is now turning to look at them and occasionally tracking their movements. It's really too bad that an insurance company that he's paid into for 28 years can just decide to not pay anymore. On a more positive note, I have the best ward family in the world. Tonight I had a crowd (I stopped counting at 24) of High Priests, Elders, Young men and even some younger kids in my yard putting in a retaining wall in my garden. This involved digging a trench, shoveling sand into the trench, leveling it out, finding and modifying some sprinkler heads, laying the brick (two layers), and going to Lowes for more brick. It was an incredible sight. I am so grateful for such great neighbors and friends. The yard looks great. Lynn and I had bought the brick last year and planned on doing this project this spring. The neighbors just got together and got it done in about 3 hours. They have also been fixing my lawnmower, mowing my lawn while my mower was down, trimming and are constantly asking what else they can do. I am very humbled by the outpouring of love being shown to our family. Tomorrow evening I plan on starting my fast in preparation for the prayer being offered by the First Presidency in the temple on Thurday at 10:00. I once again invite anyone who would like to join with us to do so. God bless you all.

Friday, April 23, 2010

I am sitting at my work computer here at Weber State in between graduation activities. I feel compelled to share with you all my experience this morning at the convocation ceremony. As a lot of you know, the keynote speaker at convocation was President Thomas S. Monson. For those of you who are unfamiliar with our LDS faith, President Monson is the Prophet of our Church. For Catholics, it's like having the Pope come speak. His counselors President Uchdorff (sp?) and President Eyring were also there. President Monson was also being awarded one of the Honorary Humanitarian Doctoral Degrees. Of course he gave a very inspiring speech, and afterwards, some of the faculty went up to see if we could shake his hand or something. There were alot of people trying to get at him. On my way up, I was able to shake the hands of Presidents Uchdorff and Eyring, and then I just kind of hung around the people who were trying to shake the Prophet's hand. I could tell that they were trying to move him out. I just took a deep breath and stepped up and held out my hand. He took it and I told him I just had to touch his hand because my husband had been in a coma for 10 weeks. He could see the tears in my eyes and he hugged me and asked me what my husband's name was. I told him and he said to his assistant, "I want that name. Write it down." So they asked me to spell it for them. He then informed me that on Thursday at 10:00, the First Presidency and the Quorum of the Twelve Apostles will be having their prayer circle in the temple and that Lynn's name will be there. He told me that wherever I am at that time I should also be in prayer for Lynn. He said that he would keep Lynn's name there for a while. I thanked him profusely and walked away feeling my spirit lifted to not only have been in the presence of this man of God, but for his interest in mine and Lynn's welfare. A couple of my co-workers were there witnessing this, and they immediately suggested that next Thursday we also have a fast for Lynn while they are praying. So I am inviting anyone who would like to take part in a special fast for Lynn on Thursday to join us, and to maybe stop at 10:00 and offer a prayer to go along with the prayer of the brethren. I know that the power of collective prayer is great and that Heavenly Father hears all of his children's prayers no matter what religion they belong to. Thank you all for your continued support and the prayers and fasting that you have already been doing. I know that Lynn is feeling them and they are helping not only him but me.

Wednesday, April 21, 2010

OK, sorry I haven't been on in a while. First of all, I have had a very bad cold and just haven't felt like doing anything when I've returned home from being with Lynn. Second, not much of significance had been happening and it's kind of depressing to keep saying that there is no change. I hope you all understand that when there is not much change or when he has very sleepy, quiet days, it is kind of hard emotionally on me because I am not seeing the progress I want to see. Between being sick and not much going on last week, I just wasn't in the mood to update the blog. I would like to report however, that a few good things have happened. Last week on the 12th and 13th, Lynn had good days where he was making eye contact and trying to follow verbal command. He has been able to make his hand and arm move. Unfortunately, when he finally gets it moving, he can't get it to stop, but that's OK. Last Wednesday, the 14th, he received his second dose of Remicade for his neurosarcoid. They have to premedicate him with Benedryl and so he was sleepy not only that day, but the next as well. On Friday, I was so sick, I couldn't go see him and his parents reported that he had his eyes open a great deal of the day, but when I saw him the next two days (Saturday and Sunday), he was very sleepy. I was getting discouraged. The next day on Monday, when we finished showering him, he had his eyes open and all of a sudden he started some rythmic movements with his mouth, then in his face. Then those stopped and he had jerking in his arm and then it moved to the face again and then to the other arm. My first thought was that he was having some kind of seizure activity. That really bummed me out because we have not had that problem. I was so worried that he would not show any improvement that I knew he had made when he had his appointment with his neurologists the next day. The next day was his appointment. When I got to the hospital, he was again sleepy. We loaded him in the South Davis Van and he slept the whole way. When we got there, they rolled us into a room. Lynn was on a stretcher. When the doctors came in, and we were talking, he opened his eyes and looked at them as they were talking to them. When I told them about the possible seizure activity, Elaine, the doctor, explained to me that it was not a seizure but rather his basal ganglia starting to wake up and fire impulses. Right now, the movements are abnormal. Hopefully, the movements will become more normal. She said that worse case scenario, this is as good as it gets. But hopefully, things will continue to improve and he will get better. She admits that it is going very slowly and that it's baby steps, but she said that he is doing more than when she saw him three weeks ago. At that time, he wasn't even exhibiting congugate eye movement (moving his eyes together). As he rode home in the van, he was in a semi-upright position and he had his eyes open the whole way. You could see that he was looking out the window. Of course when we got him back into bed, he was exhausted and slept the rest of the afternoon but I was very glad we went. Today he had his eyes open quite a bit more. I did learn some things today about not overworking him and only giving him stimulis for about 15 minutes at a time. So I tried that today and I don't think he was as tired out. You could see him watching the TV. So I will continue to be patient and let him take things at his own pace. We have a long road ahead of us, but we will do it together. Please continue to pray for us both.

Monday, April 12, 2010

This weekend and today have been pretty encouraging. Lynn has seemed more alert and will turn his head to look at someone when they talk to him. This doesn't happen everytime, but it is definitely happening more and more. He also seems to respond by opening his eyes wider and lifting his head to some things I tell him. He is still not obeying verbal command, but I swear he is trying to. It will just take more time.

Friday, April 9, 2010

Lynn continues to be about the same. He has some days that are less exciting than others, but he continues to open his eyes (although most of the time they are barely open) spontaneously and when I show him picture albums, he will move his eyes back and forth to different pictures. He is still not following verbal commands which tells us he is still in the coma. When I judge from day to day, the progress seems very slow, but when I judge week to week, the progress is more obvious. I am definitly learning the art of patience, although I don't know how well I am learning it. Again, we continue to be thankful for all of your prayers. Please keep them coming. He has a long way to go.

Tuesday, April 6, 2010

We have had a couple of good days. Lynn is opening his eyes more frequently. Please do not confuse this with waking up. He does move his eyes around though, blinks and a couple of times has locked onto me. It doesn't last long, but it is definitely progress. He is still unable to follow verbal commands. What's frustrating is that I don't know if he isn't understanding us or whether he just can't get his brain to engage his body yet. But I am thrilled with the small steps he is making. I have been showing him pictures of our family, playing music (all kinds), talking to him, giving him massages, running his hands over familiar objects like golf balls, golf club, scriptures, cell phone, his hat (I even put it on him), and I have him using the blanket that he always cuddled up with in from of the fireplace. I am told that if we keep stimulating him with things that are familiar to him, it will evoke memories. He is doing much better in regards to aspirating his tube feeds. Since we got the anti-reflux medicine figured out, and since I put a sign up above his bed requesting the staff to keep his head raised at 45 degrees, he is hardly coughing anything up including much for secretions. Things are going well. Your prayers are being heard. Please keep them up. We are very grateful for all of your support.

Sunday, April 4, 2010

Today was a good day. Lynn and I watched conference (OK, I watched, hopefully Lynn was listening). I had him sitting up in a Gerichair for about 7 hours. It is so good for his lungs, he hardly aspirates anything when he is in that position. Unfortunately, we can't keep him in that position too long because any one position puts him at risk for skin breakdown. However, he has been on previcid twice a day for two days now, and he is doing considerably better. He still coughs up sputum through his trach like he always has, but he is not coughing up copious amounts of his feeding like he was earlier in the week. This was the first time in over a week I didn't cry when I left him. Yesterday, because we had messed around with his feeding dose as well as he was spitting so much of it up, I had them check an ammonia level and it was up to 40. The doctors told me as long as it was under 50, we were OK, but I was nervous about it being on it's way up. So I had them draw it again today. It was down to 15. I was very happy. I think we are under control again. It's taken about a week to get it right after the move to South Davis, but I think we are good. Hopefully this week will be smoother. Happy Easter to you all.

Friday, April 2, 2010

Today was an extremely frustrating day for me. First of all, I had meetings at Weber for most of the day so I wasn't able to get to the hospital until about 3:00. I missed when they showered him so I wasn't able to see how he reacted. For the last 4 days, I've been trying to convince all of the staff, especially respiratory that Lynn was coughing up not only secretions but his tube feeds which would mean he was aspirating. He was also doing a lot of burping and bringing up some into his mouth. They all told me that it was just his secretions and that they were the same color. I told them that secretions were not supposed to smell like formula but they just kept blowing me off. Finally this afternoon, he was struggling with gagging, continuing to cough up copious amounts of "secretions" and I mentioned it again to one of the respiratory therapists who had not had him before. He was actually pretty condescending to me explaining to me that secretions looked like feeds and that all the other patients looked the same way. When he was I wasn't convinced, he said that an easy way to tell would be to put blue dye into his feeding bag and see what color he coughs up. If the secretions were blue, it would prove I was right, if they were not clear, it would prove I was wrong. So we did it. Guess who was right? So now we have everybody's attention. First they were talking about having to change his PEG tube from being in his stomach to being into his Jenunum (small instestine) which would involve a surgical procedure. They also talked about putting a larger trach in. The day charge nurse turned down his rate of feeding which made me really nervous because he has to have a certain number of calories to sustain his metabolic issue. I told her we can't be doing that unless we are also going to be checking his ammonia levels regularly. I do have to say though that the day nurse that was actually assigned to Lynn was very good and totally supportive of me throughout all of this. To make a long story short, when the next shift came on, the respiratory therapist (now that we had their attention) was very proactive. The charge nurse was awesome and he asked me if he was getting anything for acid reflux. I said that yes, he was getting prolosec every morning. When he went to check what dose he was getting, he couldn't find the order. Turns out that the order never got transferred from the U. So he has not been getting it for the whole week. The charge nurse said that he would write the order for twice a day and that he would also make sure there was ammonia level drawn in the morning. By the time I left, Lynn was calmer and resting quietly. Well, he's always resting quietly. The Bishop was there for a lot of this and since I was a basketcase and crying, I had him give Lynn a blessing as well as me. I am feeling more calm now and am hoping to get a good report in the morning. Please continue to pray for Lynn. I know all of you are. Tomorrow I plan to spend a quiet day watching General Conference with him. Until the next post...