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.