Swallow test results

The swallow test went pretty well! His epiglottis and throat are still a little bit swollen so there is a tiny bit of water getting into the lungs but nothing to worry about too much. Dad is now allowed to drink just water and thick, soft foods like applesauce, pudding, or yogurt. Only water though to drink and not an excessive amount of it.

Things to be Thankful for

From Tasha's Blog:
http://bobntashalamfam.blogspot.com/2013/11/thanks-for-this-thanksgiving.html

Preparing for swallow test

I'm happy to report more progress with dad today. I stayed with him all night and I am still with him now. The night was a little rough but this morning is better.

We had Nurse Nancy taking care of Dad last night and she was definitely keeping dad on his toes. She kept asking him what year it was, what her name was, and why he was there. It was difficult for him to remember them each time. Sometimes he could respond correctly fairly quickly but other times he would say the wrong thing ( or say he didn't know. He fell asleep around 8:15 pm but Nancy came in and woke him up at 10 and then midnight to give him pills, ask him questions and ask him to move.

It's so hard to watch dad struggle to think and to move his legs. You can tell he gets a little discouraged at times. Last night when Nancy asked him to move his left leg (his left leg isn't doing as well as his right leg) and he wasn't able to, he said "Man, I have really gone down hill with that." The nurse was quick to tell him that he was doing just fine and that it was normal to have setbacks. It's just sad to see him get so discouraged.

Around 3:00 am dad kept trying to reposition himself and I could tell he looked uncomfortable. We had already asked him a couple of times throughout the night if he was in pain at all or not and each time he said "no." We asked him again if he was in pain and he said he was uncomfortable. Nancy asked him "on a scale from 1-10 how bad is your pain?" He didn't respond and she continued "10 being really painful and 1 not being painful hardly at all." Dad finally said "I would say it is really painful." The nurse then gave him a drug that is 10 times more powerful than morphine but the dose I think was only .2ccs. He was finally able to settle down and sleep the rest of the night. That is when I was finally able to fall asleep too.

At around 5:30 am dad got a bath and they changed his sheets. They washed his hair too which was good cause he was getting quite the bed head :)

Nancy then had dad comb his hair and he remembered exactly where to part it. She also had him brush his teeth and she only had to help him at the very end.

Dad is really strong in his upper body. At one point this morning I helped him move a little to the side by having him pull on my hand. He feels really strong! He is able to move his arms great.

This morning he has been a lot stronger mentally. I have been asking him a lot of questions. It was funny last night when the nurse asked dad if he had a dog and I said "we used to have a dog." So she asked, "what was his name?" Dad said "Sandy." Which was correct but he wasn't our most recent dog. I asked him what our most recent dog's name was and that he was a Welsh Corgi mix and it took him a minute so I told him it started with an R and he finally said "Radley."

He was able to remember his birthday more quickly, the year, where he worked and what he did, info about his kids and he has been very sharp with math questions. Of course the math questions are rather simple (2+2 equals...?).

One question that was REALLY easy for him to answer was when I asked him what his favorite college football team was. He looked at me like I was crazy and said "Well, BYU" in a matter-of-fact kind of way.

I asked dad what his address was this morning and he really had to think about that. He asked "you mean in Milwaukee?" I gave him a hint and it took him a while but he finally go it.

Ralph Sandman (dad's good friend). Came and visited this morning. Dad was glad to see him and it was fun to sit and talk with him for a while. We are so grateful for everyone's love, support and prayers for dad.

His lumbar drain is still in and it has drained quite a lot. They are monitoring that very closely to make sure it doesn't get infected. They are going to do a WBC count on it today. They said they usually don't keep it in for over 5 days due to the risk of infection.

Dad was able to wiggle his toes a little better this morning, he has great feeling in his legs and feet but he is having difficulty lifting them. He gets discouraged when he tries so hard and it barely moves. Overall the Dr who was testing him sounded like he was happy with how dad is doing.

He has had his lungs listened to multiple times and each time they say it sounds good. He also is doing really well sucking in on the breathing thingy that helps with not getting pneumonia. He still sounds hoarse and has a bit of a cough but he can talk even clearer today.

Dad has been quite thirsty all night and this morning. His mouth feels dry from all the medications he is getting. He keeps asking for more ice but the nurses have been a little wary to give him too much because they don't want him to choke and aspirate to his lungs and they are trying to reduce the amount of fluids in his body (he has too much liquid in his body). It seems like he would just eat ice non stop though if we let him.

Christian emailed and said he just booked a flight to come see dad. When I told dad that Christian was coming, he smiled and got a little emotional. I then read him an email from Ahren and her family and he smiled again.

The nurse also removed the outer most dressings on the two incisions on his neck and the two by his groin. Another step in the right direction.

The next big step is the swallow test. They just wheeled him out of the room to go do it. They will take him to another room to x-ray him while he eats something. If the results from the test are positive, he will be able to drink more and possible eat. I asked dad not too long ago if he is hungry and he shrugged and said "not really." Which in some ways is good, I am glad he isn't really hungry until we find out if he is swallowing correctly and actually can eat.

Football

I am spending the night at the hospital with dad. I got here around 5:30 pm. Dad is moving his arms really well and he is talking a little more. When mom left he lifted his arm and put his hand on her shoulder as she talked to him. His voice is a little hoarse so when he talks it is more of a whisper. He was having a harder time tonight moving his legs but I think it could be that he is tired. He did move his right leg but wasn't able to move his left leg. He told mom he remembered that he was having a hard time moving his left leg earlier so that is good that he is remembering things.

The nurse said that she was able to decrease the liters of oxygen that he has been getting which is also another good sign. The nurse was also talking to us about how she works at the aquarium in Salt Lake and dad wanted to hear more about it.

My favorite part about tonight is when dad tried to find the remote and when I asked him what he needed he said "I'd like to watch some football." Haha he's so funny. So I gave him the remote and after a little bit of help showing which buttons were to change the channel and which ones were to turn up the volume, he was able to change the channels on his own. Unfortunately there weren't any games on that he was interested in. So after a little while he turned it off.

He asks for ice and he is able to take little sips of water. He said he isn't in any pain. He is only getting a light dosage of something similar to Tylenol to make him more comfortable. He is also able to use the breathing apparatus that he was using before the surgery to help prevent pneumonia.

I asked the nurse tonight if his kidneys were still doing well and she said "Yes, it is amazing how well they are doing. I think it is a little miracle they are functioning so well." So that was really good to hear.

Occupational Therapy & a Brain Workout

Dad looks even better today.  Leg movement is slowly improving, he is talking more.  

His memory is still quite fuzzy, but they've been working with him a lot - asking him questions. He can remember his birthday month, Mom's birthday month, his anniversary month.  He had a really hard time thinking of what month we are in now, even when he looked at the calendar on the wall and saw the word November.  He kept saying "February." Later, when Bob asked him again and reminded him that it started with an "N," he was able to remember "November,"

The therapist just asked him who the President of the U.S. is, and he couldn't remember. He whispered "I hate to embarrass myself." She gave him two choices, and then he knew right away that it was Barak Obama.

 It is nice to remember that his Patriarchal Blessing says something about him having a sharp mind until the end of his life.  He'll get it back. 

They still have the lumbar drain in place - they want to let it drain as much as possible. 

He is having an occupational therapy assessment now - I'll update later. They just asked him about what equipment he has at home - walker, cane, walk in shower, security bars around tub, etc.  Asked him if he has been able to walk, drive, take care of himself up to this point.  I wonder how much of that equipment he'll have need for at first.

The occupational therapist is happy with the improvement. She's talking now about Physical Therapy & Rehab after he is released from the hospital. Probably 3 hrs of therapy a day.  

I love you

There isn't a lot to report on today. Dad had an overall good day and has definite improvements. He first got the trach tube removed and then an oxygen mask was put on his face and then later in the day he was switched back to just oxygen tubes to his nose. He's been able to move his feet each time they ask him to and he can move his arms better. He can whisper "yes," and he even said " I love you" tonight. He seems to like holding someone's hand and he will squeeze it quite often as you hold it. He drifts off to sleep quite often but then wakes up often as well.

Uncle Keith, Bob and Preston gave him a priesthood blessing tonight. Keith said in the blessing that dad would be healed, the systems of his body would work, he would continue to regain use of his legs, and that he would be able to support his family, and fulfill his responsibilities as a husband, father, and grandfather.

The lumbar drain is still in and it keeps draining a little bit. The doctor wanted his blood pressure to be a little bit on the high side today to get as much circulation and blood flow to each of his organs.

Mom, Preston, Tasha and I left the hospital around 8:00 pm tonight. Bob will spend the night with him again. The nurses and doctors have been wonderful. We are lucky to have such caring staff.

Paraplegia and Diabetes

We just talked to the doctor. Dad just lost leg function (paraplegia). They are about to place a lumbar drain. This is not good news but not insurmountable. Pray for him. Dad has gone through a lot. He is awake and aware right now.

*update* He is breathing on his own and they are preparing to remove the breathing tube. They are checking him for diabetes.

They drained a lot of spinal fluid. He had a lot of pressure on his spine. He is moving his legs!! It is a slight movement but hopefully will increase over the next 24 hrs. And his kidneys are functioning. Yeay!

His blood sugar looked good. It could have been high because they are giving him steroids. Breathing tube is out! He said "hi."

Talking with Dr. Schorlemmer MD

After dad had to be put under again because of how poorly he was functioning right after surgery, it took him extra long to wake up again. They finally let us go see him around 8:30 pm. He was still very sleepy. At first he would respond to mom talking to him by opening his eyes and barely moving his hand.

Bob, Tasha, mom and I stood by his side and talked with the nurses for quite a while. After a while another Dr. came in and tried to stimulate him to wake up. He tried to get dad to wiggle his fingers and he pinched his toes. Dad didn't respond to either of these but he did open his eyes, stick out his tongue and nodded.

The doctors and nurses were hoping he would respond a little quicker than he was but they weren't too concerned. They said everyone is different and he is just taking a little longer.

At about 10:00 pm Tasha and mom left to go home. Bob was planning on staying the night and I wanted to just stay a little longer.

I'm glad I did stay because Dr. Schorlemmer came to assess dad just a few minutes after Mom and Tasha left. I was very impressed with Dr. Schorlemmer. He is incredibly sharp and he gave great detail in explaining everything to me. You can tell he is so passionate about what he does and he cares so much about his patients. Mom found out that he was planning on going out of town for Thanksgiving but because of dad's situation, he decided to stay. He talked to me and Bob for a good 45 mins.

Before he talked to us he talked to dad and I was so happy to see that dad moved each leg for the doctor and even lifted them both up at the same time. He nodded, followed the doctor with his eyes, and moved his hand. It was very good to see him respond to that extent finally.

The image below is a before and after of the main blood vessel. You can see how the blood flow is much stronger on the vessels that branch out right and left in the after image and there are not as many vessels that are leaking. He showed me this image and another one and sat there and explained what was going on in the images for about 15 minutes but it was definitely way over my head. He did keep saying though that the picture on the right "just looks beautiful."

As the doctor was talking to me he said something that I will never forget. He said that what dad has gone through "is the worst thing that can happen to the human body." I was so shocked to hear this I made him repeat it. The reason being that the aorta and the blood vessel that was split effects every organ in the body. There is blood supply branching out to the kidneys, lungs, gut, etc. When the dissection occurred the blood flow to each of these organs could have been compromised. He said dad is in such a critical phase. Only time will tell whether or not these organs will be effected. He said the first 24 hrs they are worried about the back and paraplegia, the next day they worry about the lungs and kidneys, and the next day they worry about the gut (I hope I remembered that all correctly). He said there have been patients who have done really well but by the forth day the gut hasn't received enough blood so it starts to die and the patient just goes downhill from there. He did say that while they were in surgery there an excess amount of acid in the stomach which is not a good sign. At this point he is concerned as to why it was there. He said it might be a concern or it might not. A little while later a nurse brought a test result back and he said "oh good, the acid in the stomach has reduced."

He said as they move forward they will try to treat one problem at a time because each medication they add will effect everything else in the process. As he was explaining all the many many risks I said "wow, it's very complicated," and he said "complicated probably isn't the right word." I said "complicated would be an understatement?" He said "a major understatement."

He also said "I usually stop worrying about these patients after about 5 years." There are just so many hurdles they have to cross. So many things that can go wrong.

He told me this surgery is only 10 years old and in those 10 years he has probably performed 50 of these surgeries. He said all of them have been successful but two. He did say though that he couldn't blame the surgery for those cases because those patients had a lot more going on than just the aortic dissection.

He also explained to us that he is generally more aggressive in treating an aortic dissection by going in and repairing it than most doctors but he said in his experience, it is the best way to treat it. Patients who have the surgery have a much better chance at survival.

Post surgery

Surgery overall went well. They got the graft in as much as they needed to, from the heart down to the groin.  After the groin, the dissection looked good once the blood flow improved from the surgery.  The surgeon feels really good about it.

He showed us pictures – where the dissection was, it bulges out and caused the blood to flow into the wrong areas. The “after” pictures show the huge difference in how the blood can flow properly. They created two bypasses around the aorta for the worst parts. The graft is called an Endolumenal graft.

Right after the surgery his blood pressure spiked again. He was already on two blood pressure medications, but had to give him nitroglycerine and another blood pressure medication.  It still would not go down to normal.  So they had to put him under again.  Which required that the breathing tube get put back in (intubated), which required medication to paralyze him in order to intubate.

Usually as the patient wakes up, they ask them to move their legs because paraplegia is a possible side effect.  Dad’s paralysis from the medication was taking a long time to wear off, so they took him to get a CT scan to see if there is any pressure on the spine.  *We just heard the results – the CT scan looked clear – so no lumbar drain at this point.

His body has gone through such trauma that there are several things to watch for in the next little while:
·      Kidney problems - a main concern because of the lack of oxygen that occurred to the kidneys, the dye they had to inject during the surgery.
·      Paraplegia
·      There are weaknesses in the aortic vein in the spots where veins come off for the different organs.  Right now there not grafts developed to put into those areas.  There should be some within the next few years, but not right now.  So, those could have problems potentially, but right now they look good and it looks like there are no leaks.

He will be in the hospital for 7-10 days mostly because they are trying to get the blood pressure under control. The doctor said it is like a juggling act trying to figure out which medication to be on. Dad will be on three different medications but later he may go down to 2 depending on how he does. He has a condition where his blood pressure spikes really quickly compared to what is normal. It jumps up immediately in response to stress that would normally cause other’s blood pressure to slowly rise.  The doctor said that this condition will be the most important to control.

The doctor was optimistic that he might be able to return to work in 3-6 months.  We don’t feel so optimistic about that fact.   Mild exercise is an option, but never any intense exercise.

Placing the stint

We just got word that all the prep is done they are preparing to place the stint. Everything is going well.

The Surgery

Dad went into surgery this morning. They started the procedure at 8:47 am. At 5:00 am they gave him an antiseptic bath and changed his bed and at 6:30 they started prepping for surgery. The surgery should last between 6-8 hrs. They said he was in good spirits this morning and was cracking jokes. He did feel really tired though after his bath.

Last night Tasha and Bob came to see dad before his surgery. I was going to stay the night with dad but Bob offered to as well so we asked dad who he would rather have stay and he said "Bob." Ok then. Haha it was actually really funny how confident he said it since he has been fairly quiet and kind of out of it. I can understand though he would rather have a guy stay with him.

So I went home but didn't get home until really late. Bob stayed with him all night and Tasha and Mom went home and got some sleep which is good. Now mom and Tasha are at the hospital and Bob is at my parent's house getting some rest.

Last night dad got another priesthood blessing from some brethren from their ward. It was a nice blessing. We all were feeling good about moving forward with the surgery. We hope that everything goes smoothly.

They said that dad will have to lay flat on his back for a full 24 hrs after the surgery which they said is going to be miserable because he will get tired of being in the same position for so long. He will spend hopefully only 2 days in ICU and then maybe a day or two in a regular hospital room. So hopefully he will be able to go home either Sunday or Monday.

The nurse said that for 6 weeks after the surgery he won't be able to sit at a 90 degree angle. He has to sit at 45 degrees. That means he will be spending a lot of time in a lazy boy.

Looking better

Dad looks much better tonight than he did last night. He's thinking more clearly and his color is better. Both mom and dad are feeling good about moving forward with the surgery. He is scheduled to go into surgery at 7:30 am. The surgery lasts 6-8 hrs. If he does well he should be able to come home 3 days later.

Dad had me look at what they put on his legs. This applies pressure to his legs to reduce the risk of blood clots in the legs.

This is another thing dad has to do. He has to suck really hard really fast on this thing every 10-15 mins. This helps him not get pneumonia. 

Mom is doing surprisingly well. She is in high spirits and relatively good health.

Dad is sure hooked up to a lot of things.

Plans for surgery

The doctor just came and told mom and dad that he thinks we should do surgery. They are going to think about it for a couple hours but more than likely he will go into surgery tomorrow morning. It will be a mesh on his artery and they will have to apply it in 3 stages (3 surgeries).

Everyone please pray for us to make the right decision and that everything will go well in the surgery if we decide to move forward. Without the surgery the Dr said he would have a 50% mortality rate. He also said that the hiccups he has been experiencing are likely caused from from blood leakage from the artery. The doctor said he is a good candidate for the surgery and he feels like he will be much better off with the surgery.

Doing better

I just talked to mom, she said dad is doing better today. She said the doctors are hoping he can go home tomorrow. She said they took his arterial continuous blood pressure line out today because the longer they have that in the greater the risk for infection. Mom and aunt Christie are there with him right now. She brought a foam pad that they are going to try and put under dad so he is more comfortable. Mom said dad is mentally sharper today and the nurses and doctors keep saying that he looks really good considering all that he has been through.

Uncomfortable

I just got back from the hospital. Dad is definitely in need of prayers at this point. He's just so uncomfortable in that hospital bed. He's uncomfortable yet it is hard for him to move but he keeps trying to change his position. It was difficult for me to see him tonight in the state that he is in. Not only is he uncomfortable but he is having a hard time thinking clearly because of the morphine they gave him earlier today. He has a hard time thinking of words and sometimes he just says things that makes no sense at all. He can sort of tell that he is struggling to think and then he gets frustrated when he can't remember a word or finish his thought. He just looks really worn out and he's shaky and weak.

I'm really worried about him tonight. I hope he can get some sleep. He really would like to go home. He's tired of all the IV's and cords that he is hooked up to. The hospital bed is so uncomfortable to him. They were able to get him up for just a little bit today and he also said they sat him up on the bed for a while which is good.

His blood pressure was lower tonight. Around 110, but he is still on the IV meds. He still needs to be stable enough to take him off the IV and do well on just oral meds.

He also keeps hiccuping for some odd reason and it is very uncomfortable to him when he does. His throat hurts too and it is difficult for him to swallow. He also got a bloody nose earlier today from the oxygen he's hooked up to. They now have a humidifier attached.

While I was there our old bishop, Bro. Farrer and another brother from the ward came to visit. It was fun to visit with them and listen to their stories. Dad definitely has a lot of support from friends and family. Again, pray for dad to be able to sleep tonight and be able to go home soon.

Same CT Scan

I just got an update on Dad. The Dr. said the CT scan this morning looked about the same which is good, it hasn't gotten worse. They are still working on stabilizing his blood pressure with different meds before they let him go home.

Dad is hoping to go home soon. He had a an uncomfortable night last night. He was cold until they finally brought in some blankets and his lower back is starting to hurt from laying on his back all day. He is also having a hard time swallowing and he said everything tastes awful. Mom said she tasted what he was eating and she said it wasn't that bad so she is thinking the meds are affecting his taste. Mom said he is still just really worn out.

He is also still bleeding a little bit on his neck. He said the IV's hurt when they come and clean them.

Both mom and dad appreciate everyone's prayers.

In the hospital

Preston and I are heading down to the hospital right now. I just called the hospital and talked to dad's nurse. He said dad is doing well. They are treating his high blood pressure. He said there isn't any talk on surgery at this point.

We are here at the hospital. Dad is stable but he looks worn out and pale. I heard dad say he will definitely be taking the blood pressure medication after this ordeal. He said he doesn't want to experience that pain again.

Dad did say he ate bits of his soup and some peaches. Mom ate half a sandwich. So I am happy to report they are eating.

The nurse that mom and I talked to made it clear that the "dissection" will not heal. It will just have to be managed via medication. The nurse said dad isn't currently on pain meds because his blood pressure is much lower and therefore not causing the back pain. He does feel the pain every once in a while like when he turns on his side or hiccups.

Dad's blood pressure fluctuates between 140 and 115 (on the top) the bottom number is right around 60. The nurse said it needs to stay around 120 or below. It seems to lower when he's closing his eyes and resting.

There is something very odd about seeing your own dad in a hospital bed. It's not fun. He's always been the one to take care of me when I've been hurt or when I am not feeling well. I hope he has a full recovery and that everything will be ok.

Hearing the news

I received the following email from my mom this morning. My dad is in the hospital. I will try to update everyone as best I can via my blog. Here is her email:
_________________________________________________________________________________

Hi Everyone,

It is 5:30 a.m.  Daddy and I have had a very long night.  I will start at the beginning:  Sat. evening at about 9:00 p.m.  We drove over to the church to print off the programs for Sunday.  Daddy had done some pushups a little earlier in the evening and he felt a little pain in his chest...nothing much at all.  We finished up in the library and headed home.  We got about halfway home and he said his back just all of a sudden started hurting really badly.  He pulled over to the side of the road and got out of the car and fell on his knees on the grass by the side of the road.  It took all we had to get him in the car and drive him the rest of the way home. When we got home he was in excruciating pain.  I had to move his legs out of the car and then he fell down and couldn't get up or get in the house. He just laid on the driveway. I called 911.  The ambulance came.  He felt one pinch better when they got him in bed.  He was as white as a sheet.  They checked his vital signs and everything seemed o.k. but he just said that his back hurt really badly (a little below the shoulder blades). They did an EKG and that seemed normal. He seemed to be doing a little better and they said to call if he seemed to get worse. After doing all they could, they left. Well, he had to go to the bathroom and that ended up putting him in excruciating pain again.  He said his legs were going numb.  911 got another call. They gave him morphine for the pain.

They took him to American Fork Hospital where they did a CT scan and found that he had a torn aorta.  They started giving him statins like crazy to lower his blood pressure and more morphine.  Then they transported him by ambulance to St. Mark's Hospital in S.L.  I followed doing 85 mph.

I got him checked in and then they made me wait in a waiting room until they would come and get me.  All of a sudden I heard that there was a code blue in room 14 (his room)  people came rushing in...about 15 in all.  All this time I wasn't allowed to go in the room.  After a while a religious advisor came in with a "you poor thing" look on her face.  She said, "Your husband has taken a turn for the worse."  Then I knew that code blue meant full cardiac arrest and my first thought was..."they caused this by all the statins they gave him!"

She just sat there looking at me with great empathy.  I finally said, "Is he dead?" "Oh, no, she said but he went in to full cardiac arrest and they are working on him.  I said, "Oh good, because I believe he will be o.k." (The elders had given him a blessing that he would be able to bear the pain that he would go through and that he could get the help that he needed and that it would be temporary). She tried to comfort me but , honestly, I said, "Really, I'm fine." (which I really was except that I kind of felt weak and shaky).

After a while, Dr. Thorne, the cardiac surgeon came out and said, "Your husband is fine but he went into cardiac arrest from all the statins that they were giving him to lower his blood pressure."  He then explained to me that the tear in his aorta (which I thought was just that, a little tear, the proper word is "dissection") actually starts in the left side of his aorta and goes all the way down to his left leg!  Holy cow!

To make a long story a little shorter, he will be in the hospital for 4 to 5 days.  They will treat his condition with blood pressure medication (which probably would have prevented this if we would have done something about his high blood pressure earlier).  At this point, they don't plan to operate and repair the dissection with mesh..the plan is to see how he does unless he gets worse and just treat it with medication and rest.

I know I don't need to say that we need your prayers for him.

love,
Mom