tag:blogger.com,1999:blog-11406478309049679712024-03-18T19:55:40.387-07:00Lynn Kraaima UpdatesSterling Bohttp://www.blogger.com/profile/12867789978566730202noreply@blogger.comBlogger56125tag:blogger.com,1999:blog-1140647830904967971.post-82610390771516202252010-05-26T10:50:00.000-07:002010-05-26T10:59:32.509-07:00It 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.Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com8tag:blogger.com,1999:blog-1140647830904967971.post-51208070921048932612010-05-15T20:18:00.000-07:002010-05-15T20:39:10.873-07:00Lynn 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!Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com3tag:blogger.com,1999:blog-1140647830904967971.post-57000093540197420182010-05-11T21:11:00.000-07:002010-05-11T21:17:45.852-07:00Today 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.Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com0tag:blogger.com,1999:blog-1140647830904967971.post-61584569145756112822010-05-08T22:23:00.000-07:002010-05-08T22:30:50.943-07:00As 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!Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com1tag:blogger.com,1999:blog-1140647830904967971.post-82970194617232757632010-05-06T21:03:00.000-07:002010-05-06T21:22:39.713-07:00What 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!Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com4tag:blogger.com,1999:blog-1140647830904967971.post-67216862200824965612010-05-05T21:36:00.000-07:002010-05-05T21:46:16.483-07:00Sorry 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 <a href="mailto:heatherkraaima@yahoo.com">heatherkraaima@yahoo.com</a>. Thanks in advance for your help, and thanks again for all of your support.Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com0tag:blogger.com,1999:blog-1140647830904967971.post-33032937353629716212010-04-30T09:33:00.000-07:002010-04-30T09:43:29.343-07:00I 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 <em>Drawing on the Powers of Heaven </em>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.Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com1tag:blogger.com,1999:blog-1140647830904967971.post-16076620007260604202010-04-27T21:38:00.000-07:002010-04-27T21:55:13.178-07:00Today 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.Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com1tag:blogger.com,1999:blog-1140647830904967971.post-73648182922715008882010-04-23T10:58:00.000-07:002010-04-23T11:14:13.498-07:00I 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. <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Monson</span>. For those of you who are unfamiliar with our <span class="blsp-spelling-error" id="SPELLING_ERROR_1">LDS</span> faith, President <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Monson</span> is the Prophet of our Church. For Catholics, it's like having the Pope come speak. His counselors President <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Uchdorff</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_4">sp</span>?) and President <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Eyring</span> were also there. President <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Monson</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_7">alot</span> of people trying to get at him. On my way up, I was able to shake the hands of Presidents <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Uchdorff</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_9">Eyring</span>, 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">wherever</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">religion</span> 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.Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com8tag:blogger.com,1999:blog-1140647830904967971.post-40955499643011649912010-04-21T20:21:00.000-07:002010-04-21T21:00:15.872-07:00OK, 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.Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com6tag:blogger.com,1999:blog-1140647830904967971.post-39791070440607102022010-04-12T19:50:00.000-07:002010-04-12T19:57:25.576-07:00This 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.Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com5tag:blogger.com,1999:blog-1140647830904967971.post-14901182074611911492010-04-09T16:35:00.000-07:002010-04-09T16:39:16.920-07:00Lynn 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.Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com3tag:blogger.com,1999:blog-1140647830904967971.post-28691612280445007112010-04-06T20:35:00.000-07:002010-04-06T20:42:52.510-07:00We 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.Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com3tag:blogger.com,1999:blog-1140647830904967971.post-60810779513324436852010-04-04T19:53:00.000-07:002010-04-04T20:00:22.650-07:00Today 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.Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com2tag:blogger.com,1999:blog-1140647830904967971.post-20634083775806577562010-04-02T21:29:00.000-07:002010-04-02T22:08:59.702-07:00Today 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...Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com0tag:blogger.com,1999:blog-1140647830904967971.post-44732482233514123252010-03-31T20:33:00.000-07:002010-03-31T20:41:30.390-07:00Lynn 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!<br /><br /><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com3tag:blogger.com,1999:blog-1140647830904967971.post-34253530506735707262010-03-29T19:53:00.000-07:002010-03-29T20:04:49.311-07:00Lynn 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.Tina Kraaimahttp://www.blogger.com/profile/17524850475533135668noreply@blogger.com5tag:blogger.com,1999:blog-1140647830904967971.post-52780168063157931862010-03-26T21:36:00.000-07:002010-03-28T13:34:59.797-07:00TransferThe 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.<input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>Sterling Bohttp://www.blogger.com/profile/12867789978566730202noreply@blogger.com12tag:blogger.com,1999:blog-1140647830904967971.post-49031023066293356462010-03-24T20:29:00.000-07:002010-03-24T20:43:15.156-07:00OK, 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.Sterling Bohttp://www.blogger.com/profile/12867789978566730202noreply@blogger.com0tag:blogger.com,1999:blog-1140647830904967971.post-70936819215330703992010-03-23T06:56:00.001-07:002010-03-23T07:00:17.128-07:00Lynn 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.Sterling Bohttp://www.blogger.com/profile/12867789978566730202noreply@blogger.com0tag:blogger.com,1999:blog-1140647830904967971.post-75698467143655619942010-03-20T22:19:00.000-07:002010-03-20T22:28:15.577-07:00Sorry 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.Sterling Bohttp://www.blogger.com/profile/12867789978566730202noreply@blogger.com0tag:blogger.com,1999:blog-1140647830904967971.post-36814844970353066412010-03-16T22:09:00.000-07:002010-03-16T22:22:00.452-07:00Today 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.Sterling Bohttp://www.blogger.com/profile/12867789978566730202noreply@blogger.com0tag:blogger.com,1999:blog-1140647830904967971.post-20428798956975067092010-03-15T19:43:00.000-07:002010-03-15T19:56:38.087-07:00Lynn 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...Sterling Bohttp://www.blogger.com/profile/12867789978566730202noreply@blogger.com0tag:blogger.com,1999:blog-1140647830904967971.post-56348741829537631492010-03-13T18:02:00.000-08:002010-03-13T18:06:46.709-08:00Still 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!Sterling Bohttp://www.blogger.com/profile/12867789978566730202noreply@blogger.com0tag:blogger.com,1999:blog-1140647830904967971.post-71729168449350855532010-03-11T21:05:00.001-08:002010-03-11T21:08:07.655-08:00Just 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.Sterling Bohttp://www.blogger.com/profile/12867789978566730202noreply@blogger.com2