2 ER visits last week

Mike went to the ER twice this week. The first time we Christmas night, we got done with all the festivities of the day and were relaxing (well I was relaxing) Mike's abdomen was very full and uncomfortable he was pretty miserable, he decided he needed to get drained so we headed off to the Hospital.

You can tell you spend too much time somewhere when you walk in and they know who you are and remember your name.  When the nurse came in she remembered Mike and after asking what the issue was she went straight to the Doc.  He came in and because he only had 10 minutes left of his shift he didn't want to start the procedure and then hand it off to the new Dr. We have been so blessed to have such wonderful staff at the Dr, it makes going there and being there so much better. I am so grateful for the Dr's and nurses that are away from their family on holidays and weekends so we can go to the hospital to get the help he needs. 

The new Dr came and put in the Catheter, hooked him up to the vacuum bottles and had to leave to see other patients.  The nurse kept us company changing the bottles when needed.  They took 4 liters from his abdomen this time. 

The second visit was on Wednesday, I was sick and Mike promised me that I could stay in bed and he would take care of the house and the kids.  Mike and the boys were leaving to run some errands when Ryan came in, he told Mallory to leave and then told me Mike had fallen down the outside stairs at our house and he thought he broke is arm and ribs.  I hurried out the door to find him crying at the door.  I helped him in the house he was sitting on the stairs.  I ran in to change and get my stuff so we could leave.

  I went into Mallory's room, she was having an anxiety attack. I spent a few minutes calming her down. This is one of her biggest fears that Mike will fall and hurt himself.  We talked for a few minutes, she was mad the boys weren't right there by his side. She is always there at his side to watch him and help him.  She is so sweet and worried about her dad. 

The nurses joked with Mike that he was there for something besides his Liver! Thankfully he didn't have any broken bones but he was so MAD because it hurt so much.  The Dr. said sometimes bruised ribs and sprained arms hurt worse then broken bones. I am grateful there was no broken bones but my heart hurts for Mike he is in a lot of pain.

My sweet Hubby needs to live in a BUBBLE!

I am a horrible wife part 2

I am writing this post from Mike's hospital room.  The loopiness  continued  to get worse until I knew I had to take him to the hospital. It took me 40 minutes to get him out of the bathroom and into the hall, I had to call his brother to come help me get him out to the car. It took both of us to get him down the stairs and to the car. I have never seen him this bad!  I was very scared.  We got the the hospital and his ammonia level is at 186, his normal level is 90, and the average persons ammonia level  is at 15-30.

Our sweet little girl (Ok not so little anymore) was so scared  to see her dad that way. At 13 i dont think anyone could really understand  what is happening to their dad. We finally called her mom and she came and got her and took her home. She had been staying with us because she is sick.  Her deepest fear is that her dad is going to die! Which with the way he was last night could to her seemed like a very real fear or thought to have. 

Mike has had one good moment today and that is when I told him that I was going to our youngest sons Christmas concert he got very sad and told me to tell Tyler he wishes he could have been there. After I left and the CNA came in, he told her he felt so bad that he was missing the concert.  He doesn't know who I am but he remembers who Tyler is.

They have mike down in the ultrasound dept, they are removing the fluid from his abdomen.  They are doing several other tests as well to see if they can figure out why he got so bad so fast.

This blog has been a great place for me to put down my thoughts.

I am a horrible wife!

I am a horrible wife!  I completely lost it on Mike tonight! Mikes toxin levels are very high right now and that makes him loopy as I have said before, when he gets like this he gets cold so I told him to turn off the ceiling fan. He got up and turned off the fan and turned on the light. He told me he needed to turn on the light, I told him it was already on and he told me he needed it off so we turned it off. This went on for awhile and then I lost it!

I started laughing and couldn't stop! I was trying to explain to him what I thought he was trying to do but I couldn't stop laughing. He was getting so frustrated with me, Mallory heard the commotion and came to see what was going on. He started trying to get her to help him but he was asking for something he had just done. He was trying to turn the fan off but kept telling us he needed to turn off the light. He needed to permanently turn off the cold. I wish you could have been here to see it, it's like one of those stories that isn't as funny when you try to tell it again.

You probably think I am a horrible person.  Who laughs at their husband when he's sick? Apparently me. I think I was laughing because I really wanted to cry.

He has been talking to me all night about his feet. He needs a right foot. He needs 2 right feet. From what I can piece together his right foot is itchy and he can't find the words to explain this to me. He just keeps telling me he needs a right foot.

He is finally asleep and i had a chance to talk to Mallory,  I asked her if she was ok, she said she was, but I know how hard this is on her to see her dad like this. She is stressed. It is draining to deal with him when he is like this. I told her this is why I ask them to help around the house more then they would like, it's hard to try to deal with him all day and then try to keep up the housework also.  

I can't wait for the resurrection when both Mike and myself will have perfect bodies again. The struggles we face now will not plague us then. I look forward to that day!

U of U liver clinic visit

We went to the University of Utah (for those who know me this is a bad word!) Liver clinic.  our first question for the Dr was "Is he really a few months away from dying?" the answer is NO!!!!! 

The Dr did say that Mike's liver is getting worse but he are still a ways from dying.  The Dr took blood work to see where Mike's levels are at.  There is a thing called the MELD Score; it stands for 

Model For End-Stage Liver Disease.  The way you find your MELD score is to take the following blood test results and enter them into a MELD Calculator and it will give you your MELD score.  Mike's MELD score is at a 20.  For 5 years he was Keeping his MELD score around 12-15. since July it has been around 18-20. At 20 you qualify to be put on the Liver transplant list. Unfortunately in the state of Utah they are doing transplants with MELD scores around 30-40. We are going to be meeting with the U of U team once a month now so they can get the needed information in order to do the transplant.  

The 2 main things the Dr wants Mike to do is track his Sodium Intake and to have More Protein. With these changes and the Meds. the Dr is hoping to keep Mike's health good and to keep him out of the Hospital. It is a Fine balancing act with everything. 

Dialysis at least twice in the past week

No

Yes

Creatinine

mg/dL

Bilirubin

mg/dL

INR

Sodium

mmol/L

Hospital Visit Nov 25th.

Salt is one of the major contributors to the fluid buildup in his body and all of the wonderful Thanksgiving food we had was hard on Mikes system.

We knew this visit was coming. we could tell he had been filling with fluid but we were hoping he could wait until Monday when we could get the parenthesis done at a clinic and not the Hospital.
we play this game: how many liters are they getting out this time. I guessed 4 the nurse guessed 3 Mike guessed 5 and the Dr guessed 4.5.They pulled 4 liters out of his abdomen this time.   I won!!

You know you spend too much time in the ER when the Nurses know who you are and give you hugs when they see you.  the nurses are wonderful and the hospital we go to and I am grateful that we have gotten to know the wonderful Nurses and Drs that are helping us through this crazy life we are living.

 The Dr looked at Mikes totals and told us that with Mikes numbers he thinks Mike only has a few months left to live if he doesn't get a Liver! Talk about scaring us! We left the hospital in a daze rather than feeling better due to the help he received. 

The next day was a very emotional day.  I couldn't stop crying! all of the wonderful people around us were amazing and very supportive.

We have a Dr appointment with the U of U clinic on Thursday so we will know more then.

One of Mikes symptoms

Mike get what is called Ascites.

Ascites is the accumulation of fluid (usually serous fluid which is a pale yellow and clear fluid) that accumulates in the abdominal (peritoneal) cavity. The abdominal cavity is located below the chest cavity, separated from it by the diaphragm. Ascitic fluid can have many sources such as liver disease, cancers, congestive heart failure, or kidney failure.

The most common cause of ascites is advanced liver disease or cirrhosis. Although the exact mechanism of ascites development is not completely understood, most theories suggest portal hypertension (increased pressure in the liver blood flow to the liver) as the main contributor. The basic principle is similar to the formation of edema elsewhere in the body due to an imbalance of pressure between inside the circulation (high pressure system) and outside, in this case, the abdominal cavity (low pressure space). The increase in portal blood pressure and decrease in albumin (a protein that is carried in the blood) may be responsible in forming the pressure gradient and resulting in abdominal ascites.

when the fluid get too built up he needs to have what is called a parenthesis. they try to control the fluid through medication and diet. he is on a strict low sodium diet, and he is on a couple of water pills to try to flush the fluid out of the body. if these treatments don't work then Mike needs a therapeutic parenthesis (a needle carefully is placed into the abdominal area, under sterile conditions) can be performed to remove large amounts of fluid. A few liters (up to 4 to 5 liters) of fluid can be removed safely by this procedure each time. For patients with malignant ascites, this procedure may also be more effective than diuretic use.  Mike has had this done multiple times since July.  he had 2 drains in July, then he did pretty good until October.

October 7th Mike woke up very full of fluid. we had the kids this weekend and Ryan couldn't find his church clothes so I had him take Mike to the hospital and I took the younger 2 to church. The hospital drained 7.4 liters from Mikes abdomen that is just over 2 gallons of fluid he was carrying. no wonder he felt so full and couldn't eat, he felt full and had a hard time eating anything. 

we knew he was full but he didn't have any insurance at the time so we kept putting off getting him tested. Ryan thought the procedure was so cool. I was texting him throughout the day to find out what was going on. 

Oct 15th he went to the ER he felt so full of fluid he couldn't eat.  they admitted him to the hospital so they could drain him again. He got upstairs about 11:30. Emily came to the hospital and picked up the kids so I could stay with Mike.  they took out 6.5 liters from his abdomen this time, that is almost 14 liters in 8 days.  

this was a real wake up call for us. this means that his liver disease is progressing rapidly. We have an appointment with the U of U liver clinic on November 30th. this seems like a lifetime away. 

Mike's Hospital Visit

One thing that happens when you are in Liver Failure is your ammonia levels skyrocket. Normal ammonia levels are:15 - 45 micrograms per deciliter (mcg/dL). Mikes ammonia level is staying right around 90-95.  this is way to high and it causes something called Hepatic encephalopathy. hepatic encephalopathy is a decline in brain function that occurs as a result of severe liver disease. In this condition, the liver cannot adequately remove toxins from the blood. This causes a buildup of toxins in the bloodstream, which can lead to brain damage. Hepatic encephalopathy can be acute (short-term) or chronic (long-term). In some cases, a person with hepatic encephalopathy may become unresponsive and slip into a coma. 

This is why Mike won't remember the next 4 days I'm going to tell you about.
On Monday Nov 13 i noticed that Mikes was starting to show the signs of having to much Ammonia (Toxins) in his system.  He wanted to go to the hospital but I talked him into staying home and just taking more Lactulose a medication that is used to remove the ammonia from his system.  if we went to the hospital they would just give him large doses of the medication. Mike had a procedure the next day and so I thought we could just treat him at home.

Tuesday morning he woke up and was not doing well.  I called his Dr but because it was early the Dr. weren't in yet so we were told to go to the Urgent care office in Provo.  we went down and while sitting waiting for the Dr. his GI doctor called and told us it was useless to be at the Urgent care and so she sent in an order for labs, X-rays, and a Cat-scan to find out where his levels were at.

In the meantime I was getting very worried about him. he was not thinking straight and couldn't remember simple things like how to get dressed and how to run the remote or his phone.  at 2:30 pm we went to his procedure a endoscopy to find out why he had begun to throw up all the time.  the results of the test were OK except for the fact that he has a yeast infection on his esophagus. the Dr. started him on 2 new meds, (oh the joys, more money spent on meds!)

 Tuesday night Mallory, our daughter, came to our house so she could go to our wards young women's activity and talked her mom into letting her sleep at our house.

We had settled down for the night and Mike had become restless, he would get up and try to go to the bathroom.  he was very disoriented and I would have to help him find the bathroom.  about 2:30 Wednesday morning I was sleeping and heard a crash, Mike had fallen down. when he got up he tried to use the bathroom but he was in our room.  I rushed him the bathroom while trying to get there, he stepped over the gate even though the gate was open, I knew at that point we needed to get him to the hospital. 

 I called Mikes mom and asked her to come out to our house to be with Mallory and help her get off to school.  I woke her up to tell her we were headed to the hospital. By the time we got to the hospital mike was almost comatose. 

We got to the hospital about 3 am, they could see right off that something was wrong so they drew labs to find out what his levels were. He was very agitated he would try to get out of bed, pull at the oxygen in his nose and the IV in his arm. He would try to talk and you could tell he knew what he was trying to say but it came out gibberish.  

I had never seen him this way to this extent before, I was pretty scared. He could remember my name but called himself Mateo (I have no idea where this name came from), when they would ask him the date he would give them his birthday. 

The labs came back and his ammonia level was at 95! They decided to admit him but had to wait until 6am when the shifts changed so he could have a 24/7 CNA because he was so agitated and wouldn't stay laying down. 

I left about 7 am to go help my mother in law get Mallory ready for school. I had called Mike's  mom when we had made it to a room in the ED she was hysterical she was lost. I guided her to our house, her and Mallory spent what was left of the night sleeping in the living room. Mallory was jealous cause the dogs slept with grandma! After they left I slept for a couple of hours  and headed back to the hospital.

They had giving Mike some sedatives trying to get him to relax, you could tell he wasn't asleep but he wasn't awake either. He was just very agitated, they wanted to do an MRI to see what was going on in his head. (When they had done a Cat scan they noticed a spot on his brain they were afraid he was having a stroke like event, that would explain some of his issues). They had to get him to calm down so he would hold still for the MRI. even on high doses of sedation he was still agitated, trying to get out of bed every few minutes.  This went on all day Wednesday.

I was getting ready to leave for the night but the nurse asked me to stay and help give him his meds for the night, they were having a hard time getting him to do anything. I got  him to swallow his meds and then came  the dreaded Lactulose! They were giving him 4 times his normal dose! It was in a cup that they put water in so he started drinking....... He looked at me so hurt and said, "the Dr said I don't have to take this anymore!" The only thing he remembers from Tues!  I put my head right down on his and told him that his Dr said he needed to take it so he could feel better, and he again made the same statement... the Dr said I didn't have to take this anymore, it was so quiet and pleading it broke my heart!!!😢 I finally got him to drink it and left. I cried all the way home! 

I get home and get a text from Mike's ex-wife, Mallory had heard me tell Mike's mom that they were thinking it might be a stroke like event and she was scared and sad. Emily asked if I could tell her about Mike's health so she would know how to help the kids. I then proceeded to tell her everything from the last couple of days. She would chuckle and say I'm not laughing but I don't know how else to react, there is just so much going on! I told her I completely understood. I do the same OMG chuckle when explaining things because it is so hard to believe this poor man is going through so much! 

The next morning I get ready to go back to the hospital (I should tell you we made a deal when we got married that we would not spend the night at the hospital, we needed our rest or we wouldn't be good the next day to help the other one that is in the hospital). I called my mom on the way over and cried........ what if he was the same way what if he wasn't going to get better! I was terrified!!!! How was I going to handle things if he didn't get better. I sat in my car for a long time too afraid to face the day! 

I get there and he is asleep, really asleep, the good sleep to help him get better, now I cried because I was relieved. He slept all day long. I could get him to wake up for a few minutes at a time, to feed him a little bit or to go to the bathroom even then he wasn't really awake. We had to call housekeeping several times to clean up his accidents. I thought I was past the getting peed on stage! (He's going to hate that I put this in!) This was the entirety of our Thursday! 

Friday morning when I get to the hospital he is awake!😁 and his is more himself then I had seen all week! He was going to be OK! We waited all day for the Dr to come. I had to leave for a little while to go to a job interview, I and still unemployed.  We continued to wait for the Dr but by 4:30 When he had not come I had to leave to get the kids and be a mom. Mike called me about 6:30 telling me the Dr said he could leave. The 2 younger kids and myself ran to the hospital to pick him up. We were so excited! He was home! 

Every sound for the next couple of days made me jump thinking he was sick again.