It is with a heavy heart that I write this posting. Last night, at 11:37 pm, Lynn passed away at home in my arms. I had not updated the blog for quite some time because after we experienced complications, we decided to bring Lynn home for his final days. When it was made evident and confirmed by the neurologists that Lynn would never come out of his coma, we knew what Lynn would want. He is now in the arms of a loving Heavenly Father and with his brother Keith and other loved ones. While it is extremely difficult to let him go, I know that he has passed his mortal test and is where he deserves to be. I want to thank all of you who supported us through this very long and difficult ordeal. Your prayers were always being answered. We prayed that Lynn would be alright. He was alright through the entire process, never in pain. He is now more than alright where he is now. I will ask you to continue to pray for me and the rest of his family, especially his children, that we might find peace. The funeral will be Friday afternoon at 2:00pm at the Roy South Stake Center in Roy, Utah which is on 5725 S. 3750 W. The viewing will be Thursday night at the Lindquist Funeral Home in Roy which is on 5600 S. and right before 3500 W. from 6-8pm.

Lynn has been tolerating his capped trach extremely well. We have not had to uncap it since it was capped. So hopefully in a few more days we will be able to talk about taking the trach out. Now we have a new development. Lynn has started "storming". For those of you who don't know what "storming" is, it is a autonomic sympathetic nervous system response which is commonly known as the "fight or flight" response. The hypothalmus of Lynn's brain is sending signals that set off this response. It causes increased heartrate, increased blood pressure, increased respiratory rate and often agitation. While this is not considered "normal" in most people, the neurologist said that they see it in almost all brain injuries. Now if you ask the neurologist, she will tell you that it doesn't really mean anything good or bad. If you ask the nurses at South Davis, they say that it is a good thing and they see it as one of the stages of waking up. Some people will progress through the "storming" stage and go onto the next stage. Some people never progress past the "storming" stage and can even regress back to a previous stage. So we still don't really know what it means for Lynn, other than it's a change which I consider a good thing. Unfortunately, it is difficult to watch Lynn in this state because he becomes very tense, breathes fast and appears agitated. We have started him on Propanolol which helps decrease the symptoms. His blood pressure and heartrate were getting pretty high and the Propanolol helps. After almost two days of "storming", he was very tired once we got the symptoms under control so he has been sleeping most of the day. You can still see that he is "storming", but he doesn't seem as distressed. I was worried that the stress of "storming" would affect his OTC deficiency and cause problems so I e-mailed Nicola Longo who is the Metabolic Geneticist who has been overseeing Lynn's treatment for OTC deficiency and asked him about it. He said that it shouldn't affect the OTC but that Propanolol was alright to give. Hopefully tonight Lynn will get some rest since he didn't get much last night. On Tuesday, Lynn has an appointment with his Neurologists at the University. It will be interesting to see what they have to say. I will try to keep you more updated. It looks like Lynn and I will be spending both of our birthdays in the hospital!

Today we capped Lynn's trach! He tolerated it just great as I knew he would. This is the next step towards removing it altogether. Another step in the progression. Other than that, he had a pretty quiet day, but that was after yesterday when he had his eyes open for a good amount of the day. He has still not talked again, but yesterday it looked as though he was trying to. I sure wish I knew what was going on inside that head of his! Another test of patience. But I will continue to rejoice in the good things that are happening.

As I suspected, the last 2 days have been pretty quiet. Lynn does keep his eyes open for longer periods of time but he has not spoken since that time on Thursday. However, the nurse did report to me that he repeated the word "Hi" Thursday night for her. Some of the times he has his eyes open, he seems as though he is still asleep with his eyes open, and then once in a while, he will appear more awake and he will focus on you and look around. It's always a guessing game. But we all have to continue to be patient. Happy Mother's Day to everyone!

What an exciting day we had! Today we put the voice valve on Lynn's trach. This is the next step towards eventually plugging and then getting rid of the trach. It allows the patient to inhale through the trach, but exhale through the mouth and nose. When we put it on, Lynn did great. When he went to cough, he was now making sounds. The new sounds were making him more alert. One of the times he coughed, he opened his eyes really wide and looked at me. I said "hi" and he said "hi"! I turned to the CNA that was there and said, "did that sound like hi to you? The CNA said, "Oh yeah, definitely". I tried to get him to do it again, and he would make sounds but you couldn't tell what he was saying like the first time. This is a huge step. Earlier in the day, he stuck his tongue out on command. It takes him a while to process what you are asking him to do, but he did it. He has a hard time repeating things because it takes so much of his energy to do the first thing. He was pretty alert for a large part of the day. Tomorrow could be good again, or we could have a quiet day or two. It seems to be the pattern. Let's hope for a good one!

Sorry I haven't posted lately. There really isn't much to tell. Lynn is about the same. We have some very encouraging days like the one I described in the last post, and then we have some not so encouraging days. It is difficult to judge progress when I am there every day. People who only see him once a week or so say they can tell differences. Today was a sleepy day. It seems as though we have a couple of more alert days and then they are followed by a couple of sleepy days. Tomorrow we are planning to try a voice valve on his trach. This allows the person to breathe in through the trach, but not out. They have to exhale through their mouth and nose. This is the next step before we plug the trach and then the next step would be to remove the trach. Wish us luck! On another note, many of you know that his daughter Heather is getting married in June. With Lynn in a coma and unable to communicate with us, this poses a problem. I am not familiar with all of the people Lynn would want to invite to the reception, never mind addresses. There are alot of people that I only know on a first name basis or that I don't know at all that we should invite, so I am asking for your help. Please send us your name and address and if you don't know me well, your association with Lynn. I realize this is very unusual, but I'm not sure how else to do this. I've actually thought about posting something in the paper so people won't feel left out. You can send your info and anyone else you think I should know about to Heather at heatherkraaima@yahoo.com. Thanks in advance for your help, and thanks again for all of your support.

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.

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.

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.

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.

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.

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.

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.

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.

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...

Lynn is doing well at South Davis. The staff is getting to know us and we are getting to know them. Today they put Lynn in the shower. It's the first shower he's had for 7 weeks! In the ICU they only did bed baths with no-rinse shampoo and so I was very anxious to get him in a real shower. It was pretty cool. They bring in this gurney that is made out of pvc pipe and plastic netting that water can go through. Then they transfer him onto it so he is still laying down. They wheel him right into the bathroom that is in his room which is big enough to accommodate the gurney. They have a hand held showerhead that they can shower him off with. I was able to go in with them and we scrubbed him head to toe. From the time they transferred him to the gurney and through the shower until they transferred him back to his bed, his eyes were open. Not sure if anything was registering, but they were open. Definitely the longest at any one time. Unfortunately, they will only be showering him Mondays, Wednesdays and Fridays. I wish we could stimulate him like that every day. Tomorrow I will be meeting with the interdisciplinary team to discuss and plan his care. Hopefully I will have more to report. Until then, thanks for all of the support!

Lynn has now been transferred to South Davis. It went very smoothly other than when I left the ICU I felt like I was leaving home and it was very emotional. When you spend 12 hours a day for 7 weeks with the same staff, they become like your family. It was very sad for me. I look forward to the day when I can take Lynn back for a visit so they can all get to know the real Lynn. The staff at South Davis were all very nice and welcoming and seemed to want to accommodate us as much as possible. The only one I haven't decided about yet is his new doctor. He was OK, but I have been very spoiled by Lynn's doctors at the U. I guess his doctor is probably the least important one anyway because he will only be stopping in 2-3 times a week, and he seems willing to order whatever I suggest anyway. The real ones I need to be concerned about are the people that will be taking care of Lynn day in and day out. These include respiratory therapists, occupational therapists, physical therapists, nutritionists, aids and nurses. They were all very kind. I am continuing to provide music therapy for Lynn via an IPOD, and the caffeine they are giving him (per crushed tablets via his feeding tube) seem to be having some effect as I am able to get him to open his eyes a little when I move his head or turn him. He is starting to move his eye back and forth a bit. Not tracking yet, but he is definitely moving them more than even a few days ago. I swear there were a couple of times this morning when he actually locked his gaze onto me. I can't say he showed any sign of recognition or not, but he is progressing slowly. We will continue to stimulate his brain as much as we can. I have to keep remembering how his doctors said that we will have to measure his progress week to week, not day to day. That's all for now. Thanks for all of the great comments of support. I love reading them. God bless you all.

Transfer

The decision has been made. After a very long, agonizing week of deliberation and prayer as well as research, I have decided that Lynn will be transferred to South Davis Hospital on Monday. In the last blog I mentioned the insurance issue. I hadn't heard back from Heritage and Educator's Mutual who were in negotiations, but I decided that South Davis is better prepared to work with brain injuries. I mentioned that I only have 60 days of long term care coverage, so I feel like we need to be as aggressive as possible in trying to bring Lynn out of his coma. South Davis couldn't guarantee anything of course, but it is what they work with all the time. I will not be working during that time so I can devote my time to augmenting whatever the therapists do to help Lynn. Today I started music therapy with him by plugging earbuds in his ears and playing music on an IPOD. So far it wasn't effective, but we will keep plugging away at it. I appreciate all the prayers on our behalf. I know a lot of you follow this blog. Feel free to post comments, I like reading them but we haven't had any for a while. They really do lift my spirits.

OK, so here's the latest update. Lynn is tolerating his PEG tube feedings very well. They removed the NJ tube from his nose so he looks better. The plan is to transfer him to an LTAC (long term acute care) facility Monday. This has posed a real problem. There are only 2 facilities north of Salt Lake that are equipped with the ability to care for trach patients, especially if they are in a coma. They are South Davis in Bountiful and a relatively new acute care wing (2 years old) at Heritage Park in Roy. They both have respiratory therapists 24/7 and have the ability to do all of the skilled nursing. The wing at Heritage was a surprise to me as I had no idea they even had it. It is run by a respiratory therapy company and Heritage staffs the nurses and aids. It has a 20 bed capacity and they are all private rooms. As long as Lynn has a trach, he would qualify to be on that unit and not out in the regular "nursing home" floors. South Davis is well known for their ventilator and trach capability. Their acute care wing does not have private rooms, and Lynn would more than likely not qualify to stay on that wing very long since they have trachs and vents all over the facility. He would pretty much be guaranteed a roomate. I have checked out both facilities thoroughly, and my first choice for several reasons is Heritage. However, the following problem has arisen. Heritage is not in my insurance network, South Davis is. Heritage and my insurance company are presently in negotiations to see if they can do an individual contract so Lynn can go there. If they can't work it out, I will have no choice but to send him to South Davis. The really bigger problem is this. No matter where I send him, my insurance company will only pay for 60 days max in a long term care facility per calendar year. So my problem becomes this: what happens if Lynn is still in a coma and has a trach? We either have to apply for Medicaid (which we would not qualify for), or we pay out of pocket which is approximately $20,000 a month! So we need to pray extra hard for Lynn to wake up within 60 days so I can bring him home. I could bring him home anyway, but I would need to someone to care for him while I work (I do eventually need to go back to work!). That again would be very costly. So please continue to pray for Lynn. Waking up would really solve our problems. I should know by the end of tomorrow how negotiations with Heritage and the insurance company go. I'll let you know when I do.

Lynn came through his surgery to place the PEG tube in his stomach beautifully. They had warned me that he would most likely come back on a ventilator since he would have had general anesthesia and be sedated with pain medication. However, when he came back, there was no need for the ventilator, he was breathing on his own through the trach with just a little oxygen support. As I mentioned in the last post, they can't use his PEG tube for 48 hours, so he continues to receive his nutrition via TPN (IV). His medications can actually still be administered via his NJ tube that is going down his nose into his jejunum. The jejunum is the beginning of the small intestine where most of your nutrients are absorbed. He continues to be in a coma and no changes are really taking place. I will keep you informed.

Sorry I haven't posted lately. I haven't been getting home until late and I haven't had that much to say. Unfortunately, when I don't post, people think that there must be something wrong, so I apologize. There really isn't too much to tell. On Monday the doctors will be inserting a PEG tube which is a feeding tube inserted through the skin into Lynn's stomach. This will do away with the necessity of the NJ tube that is presently going into his nose. The advantage to the PEG tube is that there is less chance of the tube dislodging and being in the wrong place. This is a surgical procedure that they are hoping to do with a laparoscope but might have to do it openly. Because of the need for general anesthesia and pain medication, Lynn will be back on the ventilator for a couple of days. Also, because he has to have nothing in his stomach for at least 8 hours before the surgery, they will have to begin giving all of his meds and feedings through the IV again starting tomorrow night. The PEG tube will not be able to be used for 48 hours, so the IV stuff will continue for the 48 hours after surgery. Other than that, Lynn continues to be the same. He is still responding to painful stimuli by flexing his arms. He spontaneously yawns, moves his mouth and moves his head. These are all very basic movements, but at least he is doing them. I will try to continue to keep you updated, but please understand that I may not post every day if there is nothing new to report. I appreciate all the responses I received via phone and e-mail concerning the Long Term Acute Care situation. You are all great.

Today they decided to see how Lynn would tolerate his nutrition through his feeding tube. Right now, that is the only thing that he has still been getting through his IV. They barely started it this afternoon, so we may not know for a day or so. They will continue to check his ammonia levels as well as his other labs. He is still not waking up and he is still breathing on his own through a trach. He does cough up secretions very well into the trach, and he swallows well so we really don't have to suction his mouth anymore. This leaves us in somewhat of a predicament. If Lynn tolerates his feeds well, all we really need him to do is wake up, with does not necessitate the ICU. His doctor, Elaine, approached me today with the question of have I thought about which long term care facility I want him to go to. It took me by total surprise because I assumed that he would go from ICU to Acute Care to a Medical Floor. She said that he needs to be somewhere that is set up to handle trach patients and suggested South Davis Hospital. I have never been there, and the thoughts of sending him to a long term care facility is very scary for me because I've worked in too many of them. I have an appointment with the Director of Nursing tomorrow morning to see the facility. South Davis Hospital is in Bountiful, which is closer than the U, but I would prefer a facility closer to Ogden. Does anyone know of a facility in the Ogden area that is more like a step down unit that can adequately care for trach patients? I told the doctor that I would prefer to bring him home and care for him myself, but she said she wouldn't let me since he would need 24-7 care and there would be no way I could provide that by myself. I have the nursing skills, but I don't have the ability to do it 24 hours a day. Lynn could solve the whole problem by waking up so he wouldn't need the trach and I could just bring him home and we could get home health rehab in. So let's continue to pray that Lynn will wake up! More later.

Lynn continues to sleep. There are times when I swear he is about to wake up. This morning he was moving his mouth alot like he was chewing and swallowing and he was yawning about every minute for about 15 minutes. He would stretch and act like he was just going to open his eyes, but he didn't. We are feeling like he is getting closer, but he is going to do it in his own time frame. His ammonia levels continue to remain down. One of these days, you will all open up this blog and I will have a great announcement that he has awakened. I can't wait until that day. Until the next post...

Still no change in Lynn's condition. However, the doctors have discontinued the Arginine IV and have started it's equivalent through the Dobbhoff tube. That leaves the only thing he is getting IV now is his TPN which is his nutrition. If ammonia levels stay down, then perhaps Tuesday they may start his feeding through the tube as well. He continues to seem just under the surface of waking up. He moves his mouth around and occasionally yawns. He just needs to wake up! I had a choir director that was always reminding us that "patience is a virtue". I would like to think that I am a virtuous woman, so I guess I will continue to be patient! Until the next post! Don't forget to set your clocks forward tonight!

Just a quick update. There is really no change in Lynn's condition. I am beginning to call him "Sleeping Beauty". I just wanted to report that the ammonia levels are staying down with the medication that is being given through his tube. The doctors are saying that although his progress is very slow, it is still progress. They said that we need to judge his progress by the week, not by the day. So we continue to wait...and wait...and wait.

Today was another good day. I am continuing to see baby steps in Lynn's progress. He is opening his eyes to less painful stimuli more frequently. He still looks as though nobody's home and he only keeps them open for a couple of seconds, but it is occurring more frequently. I feel we are getting closer. Also, they have decided to replace his very expensive Sodium Phenylacetate ($15,000 a bag per day) with the oral version to be put down his dobbhoff tube which is a lot less expensive. Let's hope that his digestive tract can absorb and his ammonia levels stay down. If we are successful with that, we will introduce the next thing. The doctors are wanting to make only one change at a time so they can see what works and what doesn't. I look forward to seeing what baby step Lynn makes tomorrow.

Sorry I haven't updated for a couple of days. Consider no new, good news. When things are pretty much the same, I don't have a lot to report so I don't. Today was a good day in that Lynn is beginning to look more like himself since less and less tubes are going into him. He now only has one small tube (Dobbhoff) tube going up his nose. They discontinued his NG tube to suction. He has been off Lactalose for 2 days now and his ammonia levels continue to be low. Because he is no longer on the Lactalose which causes constant diarrhea, he no longer requires the rectal tube. He is still receiving all of his medications either by SQ (Lovenox) or IV. He is now down to receiving the following medications. Arginine, Sodium Phenylacetate (this is the really expensive one), TPN (his nutrition), Potassium, Lovenox, and Levoquin (for a UTI). This is down considerably from when he had 21 drips going at the beginning. Probably the most exciting thing that happened was when I was suctioning his trach, (yes, I am suctioning my husband's trach if a nurse isn't in the room to do it and it needs it) Lynn opened his eyes, blinked and then closed them slowly. This happened right before it was time for me to leave. He still looks as if no one is home, and his eyes were only open for a few seconds, but when he started to slowly close them, I was telling him, "no, don't close your eyes!" but he didn't listen. Still though, it was exciting because until then, he was only opening them when the neuro team inflicted great pain. I guess that getting all of your oxygen sucked out of your airway is just as traumatic now, so I got the same response. I really do feel that Lynn is closer to the surface of waking up than he has been and he continues to make small progress daily. His neurologist told me today that when she was researching his condition, she found two other case studies that matched his. These people were in their 30's and 40's and were never diagnosed until they were given steroids and had similar reactions. The good news she had was that they both went on to make full recoveries! So I remain more hopeful and will continue to pray that Lynn will follow the same course they did. I know you are all fasting and praying for him as well. I know the Lord is answering our prayers. Until the next update, God bless all of you.

Lynn is continuing to make progress in baby steps, but progress still the same. Today during the neuro exam, when the doctor initiated the very painful stimulus and told him to open his eyes, he opened them for about 5 seconds which is about 4 seconds longer than yesterday. He has also for at least the moment, been taken off the ventilator and is breathing through the trach completely on his own with only oxygen being delivered through the trach. They started this as a trial about 30 minutes ago and he has done so well, they will leave him off as long as he can handle it, although they may give him a rest during the night. They also got him up for the first time into a cardiac chair so he was in a sitting up position for a while. It was kind of funny because it just looked like he was sleeping in the chair. I feel that each day Lynn is getting closer and closer to waking up.

Lynn continues to make very small baby steps in his progress. He is now starting to flex his knees without stimulation and wriggles his lower legs and feet without stimulation. Although he has yet to wake up yet, today when one of the neurologists inflicted a VERY STRONG pain stimulus and yelled at him to open his eyes, he did open them momentarily. It didn't last long and they looked pretty glazed over, but it's a start. He has also back on spontaneous breathing with the ventilator only for backup. So far he has tolerated that much better than last time. Every four hours, the respiratory therapists come in and give him "sighs" with the ventilator which basically means that they give him stronger breaths for a few minutes which helps keep his alveoli (tiny air sacs in the bases of his lungs) open. The best news is that Dr. Elaine Skalaway is back on service this week. All of the neurologist attendings have been great, but Elaine is outstanding. She is the one who was on service when Lynn was first brought to the University and she took care of him when he was at his worst. She is extremely smart and very compassionate but professional. I am so happy she is back for a while. Let's pray that Lynn continues to make baby steps tomorrow! Until then.

So this is day 23 since I took Lynn to the ER. The ritilin didn't seem to help, so they discontinued it and have decided to try a drug that is used for narcolepsy. For those of you who don't know, narcolepsy is a condition where people fall asleep at any time. They can be in the middle of driving, standing, and it is a real disability. Lynn does not have narcolepsy, but he does seem to have a problem waking up. This medicine helps people stay awake. Let's just hope it works on Lynn. They took him off the continuous EEG, and when they took off all the electrodes which had been applied and reapplied for the last 3 weeks, his hair (what there is of it) was just cakes with glue. This glue is basically like airplane glue. At first I thought I was going to have to have them shave him bald, but instead I asked them what usually works and they said nail polish remover. They said they would do it, but I asked if they could just give it to me because it would give me something to do. Two hours later, his hair was back to relatively normal, his face was shaved, and his nails were filed. I'm sure that at least if he didn't feel better, he certainly looks better and I feel alot better. I certainly pulled at his hair enough that he would flinch, but he still didn't open his eyes. Hopefully tomorrow. Please continue the prayers. I am sure they are helping Lynn with each of his little baby steps, however small.

Here's today's update. Lynn stays pretty much the same. The ritilin has not really had an effect yet other than his legs are kind of wriggling a little more. The doctors decided to go ahead and start the medication that will treat his neuro sarcoidosis. They did tell me that usually you don't see any kind of change for at least a week, so next week we will repeat the MRI and see what shows up in the way of sarcoidosis of the brain. This treatment is usually done outpatient every 6 weeks, so the doctors had to get special permission from the chief medical officer to treat him as an impatient. I guess the issue is that many times insurance companies don't pay for the medication inpatient and the hospital has to "eat it". They had to make a case for Lynn. I told them to remind them that we are double insured and they are getting paid for everything else as well as the high amounts being billed to my insurance company are also paying for half of the other patients in the ICU who don't have insurance. The doctors just laughed at me and totally agreed! I have no idea if they actually took that piece of info to the CMO, but whatever. I'm beginning to get just a bit testy and fiesty concerning Lynn's care lately. With all of the changing doctors and nurses (since this is a teaching hospital they are always changing who's on service), I have had to set some of them straight on his history and treatment that's been going on the past 3 weeks. Lynn better wake up and get better quick because I think I have the capacity to become a real witch if needed. So lets all hope he cooperates so that doesn't happen! Until tomorrow!

I am about to leave for the hospital this morning. Nothing exciting happened yesterday, and I didn't receive any phone calls last night. The only change is that they have decided to try giving Lynn ritilyn (sp?) to see if they can give him a jump start. Sometimes it works, sometimes not. For those of you who don't know, it is a drug given to children for ADD, but in adults it acts like a stimulant. I am told it usually takes a couple of days for it to take effect if it is going to. Let's all cross our fingers. I let you know more later.

There is nothing new to report other than they did take out the bolt this morning and he is now back on spontaneous respirations with only ventilator assist if necessary. He was on this mode over a week ago, but then when his ammonia and ICP levels rose again, and they had to sedate him again, they put him on full respirator. So now he is breathing on his own with just the ventilator to back him up. He had another quiet day today and we continue to wait.

There is not much to post today. The neuro team came in and said that everything is "status quo". Basically nothing has changed, which is actually a good thing. They will be taking out the bolt that has been measuring his ICP because they feel it is no longer an issue. That's good news. They have decided to hold off on treating him for his neuro sarcoidosis because they don't really think it's a major contributing factor to his condition at this time. They definitely want to treat him eventually, but since he is not awake yet to report any side effects that could mean allergic reaction to the drug, they would rather wait. Since before all this happened, he wasn't experiencing any neuro symptoms, they don't feel it's affecting his condition now. That's all for tonight. Thanks again for all of your support.

Today was kind of encouraging. The neuro team came in and when they did pain stimulation, Lynn flexed both arms all the way up to the trach, which the neurologist call localizing. This is evidently a really good sign. He is not only reacting, but he is localizing the reaction. They then explained to me that he is overall improving slowly and that the next step towards coming out of the coma could be a slow process. It involves opening his eyes, tracking, and responding to verbal command. They said that when the brain has experienced swelling that it can a long time to progress from one step of a coma to the next. I was pretty encouraged by their attitude. They are introducing free water into his digestive tract to see how it handles it. Remember, except for the Lactalose, he had been receiving all medications and nutrition through his IV sites. We are crossing our fingers that his gut reacts positively. So we will continue to patiently wait (not my best attribute) for him to wake up. Until tomorrow, take care.

Today has been a pretty eventful day. This morning the neuro team came in and did their daily neuro assessment. I have to say that it was the best neuro assessment I have seen so far. When they did painful stimulus (and I might add no one can do painful stimulus quite like the neuro team - ouch!), Lynn flexed both of this arms to about 90 degrees. He also moved his feet, and his eyes opened ever so slightly, but it's the first time he's done it. These are all very subtle but significant changes. The attending neurologist told us that they are very concerned about the sarcoidosis in his brain and they think they should treat it aggressively. Fortunately she told me about a fairly new medication that has had very promising results in the treatment of sarcoidosis in the brain and it is NOT a steroid. She said it has very different properties than steroids. She wants to make sure with the metabolic geneticist that it will not interfere with the treatment they are doing for his metabolic condition so they have not started it yet, but I am hopeful they will soon. They also decided that they wanted to trach him so they could get rid of the ET tube in his mouth. So this afternoon he was taken to the OR and trached and also had a lumbar puncture done. The spinal fluid was very clear, another good sign. I am so glad he has the tracheostomy. Now his poor lips will have a chance to heal. They look better already. Another great thing is that for over 24 hours now, his ICP levels have remained very low. So the next step is to see if Lynn will wake up. I can not tell you how much I want to feel him squeeze my hand when I ask him to and to have him open his eyes and know who I am. It has now been 17 days since he went into a coma at McKay. I can't believe how fast the time has gone. So again we wait. I would describe myself as more hopeful but guarded. We still have a long way to go, but good things are happening that keep me going. I continue to be amazed at the support and love Lynn and I are receiving. I will try to update tomorrow.

Sorry I haven't updated for a while. We have had quite a rollercoaster ride the past 2 days. Yesterday the neurologist said that a repeat CT scan showed quite a few areas of infarcted tissue in the brain. This is most commonly caused by stroke or other brain trauma. She painted quite a grim picture and told us that this morning the neuro team would get together and collectively decide the best course of action, whether that was to continue treatment or to consider us done. Needless to say, we were all pretty down. After she spoke to us, my son Lyman asked if I wanted to have a family prayer. There were only a few of us there, but I decided to offer it myself. I basically pleaded to our Heavenly Father to help us to understand whatever was in store for Lynn and that if he could see it his way to grant us a miracle, we would be eternally grateful. Nevertheless, we are leaving it in his hands and we wanted whatever was best for Lynn. Later, as I was sitting with my son and brother and listening to the two of them talking, I felt a huge weight lifted off my shoulders and clarity of mind came to me telling me that when the neuro team talked to me the next day, the things I should tell them I felt like needed to happen. Basically I felt that since there is no precedence in this case and there is nothing to compare it to, we can't possibly predict how Lynn's brain is going to respond long term. I felt like since the ammonia levels had only been down and under control for 3 days, we needed more time to see how Lynn would respond. This morning the neurologist came to me and said that they decided to do an MRI to see with more clarity what's going on in Lynn's brain. She explained that the CT scan is more like an X-ray, it tells you something is there, but does not give you a very clear picture. To do the MRI, they had to remove the bolt that was measuring the ICP, so they did. When the neurologist came out of the MRI, she said that it was "odd". Like that is any kind of surprise. The whole case has been "odd". Anyway, she went to consult with a neurological radiologist. I guess he's written the book on the subject. Then she comes back and starts asking questions about Lynn's sarcoidosis that he's had for 20 years. So in a nutshell, here it is. There is no sign of stroke or complications associated with stroke. However, there is quite a bit of abnormality in the white matter of the brain, however they don't know whether it is reversable or not. They are also seeing quite a bit of "stuff" in the brain matter that they are suspecting is sarcoidosis that is now in the brain. Until now, we were only aware of sarcoidosis being in the lungs. Lynn and I were aware that sarcoidosis can be found anywhere in the body, but it is most commonly localized in the respiratory system. They don't know how much of the abnormality in the brain is due to the metabolic illness he has and how much is due to sarcoidosis. So the obvious answer would be to treat the sarcoidosis, right? The problem, the normal treatment for sarcoidosis is steroids. Oops! Can't do that. That's what put him into the whole metabolic catastrophe in the first place. So the neurologist is going to consult with the doctors who are more specialized in the treatment of sarcoidosis to see if there are alternative treatments. We have been on the internet, and according to the Cleveland Clinic among other sites, there are indeed other drugs that are used to treat sarcoidosis when patients can't tolerate steroids. So they decided to replace the bolt in his head to monitor his pressures for a few more days, they have taken him off the sedation, and are hoping he will wake up. We have tried this before and his ICP rose, but we are trying again. I guess what I am saying to all of you is that I am cautiously hopeful. We certainly expected much worse news today. We still don't know how much of the brain abnormality is reversible if any, but we continue to be in awe at the love our Heavenly Father has for us. I can tell you without a shadow of a doubt that he is hearing all of our prayers. We are feeling his hand in our lives with every turn in his condition. I am so grateful to all of you who are faithfully praying, putting his name in the temple and on prayer rolls in all of your individual churches. I am so grateful for the messages of encouragement and hope to Lynn and I. The cards that have sent are so appreciated and are up on the wall of his hospital room. We even have a Jazz banner hanging up. So we will continue to count every blessing and pray for the best outcome for Lynn.

Last night before I left the hospital, Lynn's ICP rose again up to 40, so they had to bolus him 3 times with propofol, leave him on a propofol drip, which means he is sedated again, and gave him Mannitol for the brain swelling. I talked to his nurse this morning and she said that he is quiet and still on the propofol. I have not had a chance to speak to his doctors yet this morning. I have been arranging FMLA for Lynn and all of the other things that I was hoping would not have to be done. I have been in contact with Lynn's boss and Human Resources and they are all pulling for Lynn. I am assured that his job is not in jeopardy. We will take it one week at a time, but we are looking at a very long ordeal that will most likely require lots of rehab when we get over the critical portion of his illness. Lynn and I are so fortunate to be employed by Weber State and I am SO lucky that Lynn never took sick leave and very few vacations the whole time he's been there. We are definitly needing it now. Please continue to pray for Lynn's recovery, and specifically for him to wake up. Again, thanks for all the support and prayers.

Today Lynn is about the same. His ICP went up last night and they had to give Mannitol again. Today they turned off the propofol and only have him on 50mcg of fentanyl and hour. Once again, we are waiting for him to wake up. I feel like my updates are getting less and less informative, but it's because there is really no change. I guess we just need to wait until Lynn decides it's time to wake up. His ammonia levels remain within normal range. So we will continue to be patient and wait. Perhaps this is what I am to learn from all of this. Patience. I'll try to learn it fast so he can get better. Until the next update, thanks to all of you who are following this blog.

Here is the update on Lynn this morning. Unfortunately I am not able to be at the hospital today because today is the day that Sterling is placing her baby for adoption and I need to be with her. Dad and Mom Kraaima are standing by and keeping me updated. The doctor came in today and told them that we are now where we were 4 days ago when everything was looking better and before they started changing everything from IV to PO (down his tube). His ammonia level is back down to 17, his ICP levels are within an acceptable range. The vent is still there as a back up for his breathing although he continues to breathe on his own. The plan now is to keep everything the same until he wakes up and then they will slowly make changes. In this morning's neuro exam, he is still doing some extension and one arm is showing some flexion on pain stimulation, but he is still not responding to verbal command or opening his eyes. We will continue to wait patiently until he decides to wake up. Again, thanks to all of you who have sent cards and messages of support and prayer. We are putting them up on his wall so he will eventually seen them.

So the update for the day is this. I received a phone call from Lynn's doctor this morning. For some reason, at night Lynn seems to experience setbacks. Last night, his ammonia levels spiked up to over 200 again. His ICP rose up to 50. It seems that since they started introducing his meds and special diet through his NG tube and stopped the IV meds, the levels are very sporatic. Evidently his digestive system is not absorbing well enough to be able to rely on it to absorb all of his meds effectively. That makes his GI system too unreliable to administer meds and nutrition effectively. So for the time being, they are administering everything except Lactolose by IV. Earlier he was breathing off his excess 02 on his own, but now he is not. So they have adjusted the vent to help him. They have also restarted the propofol at a very low rate to help control his ICP as well as his blood pressure. They did a CT scan and he still has pretty good swelling on the brain. Although the pressure on the brain is very concerning, the neurologist does not think that anything we are seeing is not reversable. The problem with Lynn's condition is, they know what's causing this, the problem is, they are still not sure of how to treat it. Because this is a very rare metabolic condition, the treatment is still trial and error. He is still in a catabolic state, and until his body brings itself out of that state, they will continue to treat the symptoms. We have a wonderful team of doctors working with us. It's too bad we can't call House to come consult! We continue to pray that Lynn will make a recovery and return to us. We appreciate all of your prayers as well. We'll stay in touch.

Today is February 20th. Last night by the time I left the hospital, Lynn's ammonia levels were down to 74 and it is expected that they will continue to decrease. During a neuro exam, Lynn did demonstrate flexion in his right arm, a good sign. Up until then, the only response he gave during a pain stimulation was extension. Flexion is the next level of response. He only demonstrated it twice, but we are excited about every small step. This morning, I called his nurse to see what kind of night he had and she told me that they had a bit of a scare. She was suctioning out his ET tube and she got a mucous plug. Part of it broke off and plugged the tube. They had to disconnect from the vent and bag him while they tried to dislodge the plug. She said that they all kinds of doctors in there ready to do whatever was needed. Of course his ICP went way up, but that eventually came down. She said she thought they were going to have to reintubate him but they were able to dislodge the plug and he was fine. This morning, we are inducing Sterling so I am not with Lynn. His family is there and will be updating me through the day. We know that many of you are concerned and supporting Sterling at this time, but we are asking that no visitors come. You are welcome to view her blog about the pregnancy and birth at www.benandsterlingsbaby.blogspot.com We appreciate your support and will keep you posted about Lynn as progress is made.

So this morning was a bit disappointing. I arrived at Lynn's room and his neurologist who is also the primary caregiver in the NCCC was there. She told me that during the night, Lynn's ammonia level continued to rise and eventually got to 249. A reminder for those of you don't know, normal ammonia levels are 0-25. Yesterday, they had stopped the lactalose, changed his very expensive IV medication to po through the tube and were no longer giving Mannitol because he was maintaining his own ICP levels. They had also increased his Protein a little. Obviously, his body was not ready to accept all of these changes. So where we are right now is this. They have restarted the Lactalose, they have treated with a dose of Mannitol and his ICP is down to 3. They have backed down on the Protein and they have increased his dose of the amino acid that he was originally being given IV. So Lynn is really not "worse", but rather has had a setback. The elevated ammonia levels are causing a higher level of sedation. He is not being medically sedated. However, we probably won't seen him wake up today or even possibly tomorrow. Remember in an earlier post we said the doctors warned us that we might see 2 steps forward, 1 step back? This is one of those times. So we will continue to "patiently" wait and pray. Again thanks for all of your support. I'll keep you posted.

Today Heather had her nails redone, this time in honor of Lynn and his undying loyalty to the Jazz. They're very cute!

So today we are still patiently (or maybe not so patiently waiting) for Lynn to wake up. His neuro signs still seem to be improving. He reacts pretty well when he is suctioned by tightening up his arms, moving his head and moving his feet. He has still not opened his eyes nor will he follow any commands. I'm waiting for the day when I take his hand and he squeezes back! Most of his IV meds have been discontinued and he is getting everything through his Dobbhoff tube. For those of you who don't know what that is, it's a tube inserted through his nose that goes into the small intestine, bypassing the stomach. He continues to breathe on his own and is only intubated with ventilator support in case he has an apneic (stops breathing) episode. So far, he seems to be doing fine. The doctor explained that because of all the lactolose they gave him, and the subsequent diarrhea that follows, his body is in a metabolic acidosis state, and so he is compensating by increasing his respirations to blow off the extra CO2 that is built up in his body. He is presently breathing at a rate of between 27-33, but they are considering this a good sign since he is doing this on his own to compensate. The bolt is still in his head measuring his intra-cranial pressures which are within acceptable ranges, and he is still hooked up to a continuous EEG to measure his brain activity. According to the neurologist, he is really doing all of the right things, and it may take days to actually wake up. I am not as patient as the doctor. It has now been 9 days since my husband knew who I was, and 8 days since he was put into an hyperammoniaemia induced coma. Come on Lynn, it's time to wake up! (just kidding, I'll wait as long as it takes.) I will be forever grateful for the wonderful doctors and nurses at McKay Dee and the University of Utah Hospitals who have not only taken incredible care of Lynn, but who have continued to go the extra mile for all of this family. They are the best! I will also be eternally grateful for all of you who are showing us so much support at this difficult time. Our Bishop has been here every day since the night I took Lynn to the ER. Sometimes twice a day. I reminded him the other night that there is a whole ward out there who needs him too. He's the best. I will continue to update as changes happen. Consider no news, good news. Thanks.

Today is the day we are hoping good things happen. They repeated the CT scan on Lynn this morning and the doctor said it was "significantly better". I love that word significant. Anyway, they are weening him from the sedation, he is breathing on his own with an occasional breath from the vent. He is showing some signs of reactivity such as blinking with his eyes closed, retracting when deep suctioned, he slightly turned his head when the nurse went to do oral care, and he demonstrated a very large gag reflex when deep suctioned as well. Since a major gag reflex is characteristic of Lynn's (we all know his fear of the dentist), I am very encouraged. It may still be a while before we see signs of consciousness, but I'm sure it will come. We are encouraged and strengthened by all of your prayers and wishes for Lynn. You all are the best!

This morning there is nothing new to report. The doctors are going to continue to keep Lynn quiet and sedated to allow for the swelling in the brain to decrease. He continues to have good neuro checks and did not pose any problems through the night. The plan is to get a bit more aggressive tomorrow and hopefully bring him out of sedation. We must remember however, that it could still be days before he is completely out of the coma and able to know what's going on. Again, we must be patient and wait. All in all, the news in hopeful. Have a great day.

Just a quick update. Lynn has been transferred to the Neuro ICU, not because anything has gotten any worse, but rather because most of what we are dealing with now is neuro stuff. With the fluctuating pressure in the brain caused from swelling, and the continuous EEGmonitoring as well as the ICP monitoring, the team felt it best that instead of constantly calling Neuro to come up, we should just put him in the Neuro ICU. I had a good talk with the Neurologist today and she was explaining that a couple of days ago when Lynn started having swelling of the brain, he experienced a small stroke in a portion of the left side of his brain caused from the swelling pressing on an artery. We won't know the full extent of lasting damage, but because the neuro exam was very good, they are very optimistic that there is no paralysis involved. There may be possible vision problems in the left eye but we really won't know until he wakes up. Evidently there are a several days that are necessary for the swelling to go down, (the swelling was caused by the elevated ammonium levels) and so until the swelling is down (in approximately 48 hours) they will keep him very sedated and quiet. Once the swelling is down, they will aggressively work on getting him to wake up. Once again, we are encouraged by what the doctors are telling us. Will keep in touch.

So I thought I would give a brief history for those of you who have only recently heard about Lynn's predicament. Then you can continue by looking at all of my posts since I started.
Last Sunday night he started vomiting. I thought it was the flu. Monday he was still sick, but my daughter said she had "kind of a weird conversation with him". He went to work on Tuesday because he had an important meeting he needed to be to even though I wanted him to stay home because he was acting a little "slow". I called to check on him that afternoon and his secretary said he was acting a bit strange and doing some bizarre things. I called his doctor and told him I thought he was having steroid psychosis because he was acting a bit strange. He said to half the dose of the prednisone the next day. I went and picked him up from work and he was still coherent so I took him home to rest. Later that evening he was obviously getting worse so I took him to the ER. He became very uncooperative and I had to call his brother to come help me get him in the car and to the hospital. By the time we got him there, he didn't know who I was. He was fighting us and kept trying to climb out of the bed so we had to keep holding him down. They admitted him to IMC, by the next day he was in a self-induced coma, his ammonia levels were up to 400. The interesting thing was, his liver tests were not out of whack, they were normal. By Wednesday night he was in the ICU at McKay and by Thursday morning, they decided to ship to the U. After we got to the U, my kids set up a blog where I have been keeping his progress or lack of progress updated. If you read the past posts, you will have a chronological record of events.
This morning there really isn't anything new to report. His ICP level went up a little last night while they were doing some stuff that evidently bugged him, so he is back on the sedation. They took him for another CT scan early this morning but I haven't heard anything and haven't seen the doctor yet this morning. I'll update as I can.

So you know how in the last posting I said that Lynn had a seizure and so they sedated him again and upped the vent? When the neurologist came in to read the EEG, he determined that it was not a seizure but rather muscle spasms due to nonuse for so long. So now the Propofol is off, they will ween the vent as able and we will play the waiting game. Since his body put itself into the coma, it won't just be a matter of reversing the sedative. His body will have to bring itself out of the coma. I have gone home for some much needed sleep. Will keep in touch.

The doctors have decided to increase Lynn's sedation and to change the respirator back to full respirations. He had a small seizure and they decided to sedate him for a while longer to allow his body to recover more. His body is still under a lot of stress from the illness and it isn't all that expected for him to seize under the rigors of the treatments. One thing about ICU, it is certainly a "two steps forward, one step back" type of environment. The good news to remember is that he had an awesome neuro exam which indicates that his brain function is good. As things seem to change hour to hour, we will continue to update as needed. Thanks again for your concern.

Good new! Today the neuroteam (8 of them) came in and did an extensive workup and assessment on Lynn. They came out and said "He is a miracle patient". He is beginning to react to painful stimuli (he now has some pretty impressive bruises!), his pupils are starting to show some reactivity, and he continues to overbreathe the vent. His ICP level has continued to be in perfect range. Therefore, they have turned off the propofol, they have changed the vent setting to support mode (he is breathing on his own) and they have done a doppler study of the perfusion of the brain which according to the tech (shhh), showed good perfusion. We were not expecting this kind of news today. We certainly have a long way to go, and of course he isn't totally out of the woods, but I can't imagine a better Valentine's present from my husband. We continue to be amazed at the power of prayer, fasting and priesthood. Thanks for all of your support!

I don't even know where to start with this post. About an hour after my last post this afternoon, the doctor came out and said she was sending Lynn down to get a STAT CT scan because she didn't like the looks of his pupils. I wasn't in the waiting room when she came out and told the family so they came and got me and of course the nurse in me, said "what didn't she like about the pupils? Were they dilated? Pinpointed? unreactive? (they always have been since this started) etc." So I went and looked and they were fixed and dilated, a change since this morning when they were small. So of course I knew that this was a very bad neurological sign and waited to hear the results. She told us the CT scan showed significant swelling of the brain and pooled blood in both the subarachnoid space and surrounding the outside of the brain. All of a sudden, the whole room was filled with neurosurgeons and nurses and respiratory therapists and lots of packages of equipment. They wanted to insert an ICP bolt to measure his intracranial pressure. Then the neurosurgeon came out and told me that his PT and PTT were to high and that it was against their protocol to place an ICP monitor because it could most likely cause a bleed that would :do him in." They wanted to give him FFP's but the lab said that they couldn't have them ready for an hour and a half. So I was told that I could either choose to wait and chance the pressure building and "doing him in" or I could take a chance on placing the ICP and "doing him in" What kind of choice is that? Our attending physician who is the most awesome person in the world called the lab, told them that was unacceptable and personally went down, picked up the blood, and raced it up to the room. Meanwhile, the neuroteam had gone ahead and started inserting the ICP anyway figuring either way was risky. She had also already increased his dose of Manitol (works against brain swelling) and other interventions. During all of this, we had a family prayer with the few of us that were there. We told Heavenly Father that we wanted whatever was best for Lynn to happen and that it was in His hands. I want to clarify that this is not the first prayer that has offered, but this one was being offered during all of these interventions. Once they got the ICP placed, the doctor comes out shaking her head and says, "I don't get it", the CT scan shows definite swelling and blood. The ICP shows normal pressures. They even changed out the catheter and tried a different monitor to make sure it wasn't an equipment malfunction. Same result. So evidently, Lynn has enough empty space in his head that it can accomadate swelling of the brain. Yes, you all have permission to tease him about that later. Also, about 2 hours later, his pupils were back to the smaller size. Evidently the added Manitol and other measures were effective, not to mention the faith of many people. He remained pretty much the same the rest of the afternoon but about an hour ago, I went to his room to see him and his doctor was in there. She says "I dont' get it, but he's overbreathing the vent." He is still being very heavily sedated because he is not up to temp yet but he is beginning to breathe on his own. Another tender mercy. We are still cautious about being optimistic, but we can't deny the power of the priesthood and prayer. Please continue your prayers and support. I'll update tomorrow.

This morning they stopped the dialysis and some of Lynn's medications that were being used to treat the elevated ammonia levels. He is still being slowly warmed and is presently at 33 Celsius. They expect him to be at normal temp sometime Sunday afternoon or evening. If all goes according to plan, they will begin to decrease the amount of sedation, watching for seizure activity or other signs of neuro problems. Today I was able to talk to Dr. Box a little more. He is the liver specialist who actually got in contact with the pediatric metabolic illness specialist at Primary Childrens. It seems as though they are suspecting that Lynn has had a very rare metabolic illness since he was a baby that causes his body to react adversly when it is put into a highly catabolic state like it was from the high dose steroids. If they are right, then whenever something that could cause his metabolism to go up significantly is introduced into his body whether by medication, high fever, etc, there are not enough carbohydrates and fats being ingested to be used for energy and so he body starts burning protein and muscle causing the high ammonia levels. High ammonia levels cause neurological problems like Lynn experienced which put him into a coma and all the rest he has been dealing with. If this proves to be the problem, which we won't know until next week sometime, it will be important to treat him appropriately whenever we know that he will be having some treatment or illness that can cause the metabolism to raise. This was compounded by the fact that he had been vomiting for 2 days and wasn't taking ANY carbs or fats. Needless to say, we are all thankful that things are heading in the right direction. He isn't out the woods yet, but we are thinking positively. Even though they will most likely be decreasing the sedation starting Sunday, they said it could be a few days before he shows signs of coming out of the coma, so we must be patient. Thanks for all of your prayers. I know they are what's made the difference in the outcome so far. We'll keep you informed.

So here's the latest from Lynn's doctor. They are going to continue the dialysis through the night, and they will begin to warm him at the rate of 1 degree every 12 hours. Because of this, he will continue to be heavily sedated until he reaches normal temperature which should be at least Sunday night. So we should not expect any neurological changes until then. The doctors are suspecting a genetic metabolic condition that he was probably born with and was not manifested until the high dose steroids put his body into such a stressful state that it started consuming his proteins and muscle. Through dialysis, high lipids and carbohydrates given IV, and other VERY expensive drugs that had to be ordered because they weren't even kept at the hospital, as well as the steroids beginning to wear off, the ammonia levels are down. He has continued to maintain his blood pressure without the help of lopressors, his kidney function is still good. We are hopeful that he won't sustain long-term neuro deficits. We are grateful for all of your continued prayers and support. We will continue to keep you updated as we receive more information.

Friday Feb. 12 2010 2:15 pm

Update:
Lynn's ammonia level is down to 85! The doctors will be meeting with me sometime this afternoon to decide the next step. While he is still very critical and certainly not out of the woods, we are excited that the level is down. He is still heavily sedated to keep him from seizing. They are also continuing the hypothermic protocol to help protect his brain function. I will update when I know more.