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.