Hello family and friends,
**Please excuse all typos and colorful commentary from yours truly. I'm tired people. and I can only edit this so many times. ;)**
My mom, Mary, was diagnosed with Cirrhosis of the liver back in March of 2017. She has never been a heavy drinker, but all the same was diagnosed with this disorder. We believe it may have a connection with an auto-immune disorder, but at the moment that is all speculation.
Very early in the morning on October 13, 2017 Mary was feeling very ill and nauseous. She started vomiting blood and Bob took her to the emergency room at Overlake hospital. She was admitted and they gave her a blood transfusion. She was alert and aware of where she was. Later that afternoon, they scheduled her for an endoscopy to see what the issue was.
When they started the endoscopy, they could not complete it because the internal bleeding was so bad in her esophagus. When your liver is not processing blood correctly it can cause back up and pressure in other areas. What Mary was suffering from is called esophageal varices. Which are dilated veins/blood vessels in the lower esophagus that bleed/rupture due to the pressure coming from the blood not going through the liver correctly. Are you still following me here?
Cave men terms just in case: Mom's liver bad = bleeding in esophagus.
Normally, doctors are able to stop bleeding using a few different methods; most commonly by banding, which they were unable to do as there was so much bleeding happening. The doctors at Overlake used an alternative method called a "Minnesota tube" which is a tube that goes down into your esophagus and has 2 balloons with it. One balloon is in your stomach to anchor it and make sure it doesn't come out, the 2nd balloon is in the esophagus and is inflated to stop the bleeding internally. like a reverse tourniquet (sort of).
While having a Minnesota tube in you also have to be on a respirator and are fully sedated. So as you can imagine Mary was quite connected with tubes and bells and whistles of all sorts. Believe it or not, they actually had a catchers mask on her face to counterbalance the tubes and to make sure everything stayed in place. They also started monitoring her blood pressure directly from her artery to make sure their readings were accurate, which was yet another machine she was hooked up to.
So that all happened in about a 6 hour period. When Mary had gone in for the endoscopy we really had no inclination of the severity of the situation. When the doctor came out to talk to us it was really hard to even grasp what she was saying as it felt so surreal. Surely this couldn't be happening to my mom who just a few hours ago was sitting in a chair reading a book and was alert and functional.
The next step in the process was to deflate the balloon to see if the bleeding had stopped which was about a 24 hour period of waiting. Unfortunately, she started bleeding again, so they had to do a procedure they call "Tipps". What they do for this procedure is they put a stint in your portal vein to redirect the blood so that it alleviates the pressure from the esophageal varices. The down side of this procedure is that it redirects away from your liver, so this blood going into your system is unfiltered which can cause high levels of ammonia. This is called Hepatic Encephalopathy. In mild cases this condition can cause confusion or disorientation but in extreme cases can cause coma like state.
So on Sunday the 15th my mom had this procedure and things went well as far as the procedure is concerned. They took her off of all sedatives and 24 hours later she was still not responsive. They said that this was because of the hepatic encephalopathy. So the next step in the process was trying to reduce her ammonia levels in her blood. So from Sunday the 15th to Sunday the 22nd, Mary was basically asleep and was on a respirator/breathing machine. There were brief moments where you would say her name and she would open her eyes a small amount, but that was about it. Each day seemed to be getting a little better, but it was a grueling and heart wrenching process.
On that Friday (5 days after the procedure) I remember standing next to my moms bed. The doctors were beginning to become very concerned about how she was not more alert yet. They did Xrays, MRI's, CT scans, EEGs, and any other test you can imagine to make sure that her brain was functioning how it is supposed to. Everything had come back normal. After each test they would tell us that we just needed to wait longer.
One of the requirements for having the respirator taken out was to have her be more alert. Mary would sort of come in and out of consciousness. She would open her eyes and if you asked her if she could hear you she would nod yes. If you asked her if she could wiggle her toes she could move her foot. But when you asked her to grab your hand she just couldn't do it. I was getting more worried with each passing day that this fog would never lift. I was terrified of all the "what if's". Believers will say to trust unto the lord and he will take care of you. But that is a tall ask of someone staring at their mom in a bed for 10 days with a breathing tube down her mouth. I tried really hard to not be scared. But it was really one of the hardest things I have ever had to do.
I was trying all my tricks to try and wake her up more. I got really close to my moms face and I had tears dripping down on to her hand and I shouted "Mom!" really loudly. She opened her eyes and she looked at me. Like really looked at me not just had her eyes open. I know she could really see me this time and see my face. I told her "Mom, I need you to wake up more so we can get you out of here. You have to squeeze my hand" and for the first time in 8 days she squeezed my hand. And then I proceeded to cry like a baby. I was overwhelmed with joy! it was definitely a monumentous mile stone at the time.
As you can imagine that was a big moment for us. It meant that she was really starting to wake up. We had a few more ups and downs in the next 24 hours. when I cam in the next day (Saturday) she was barely awake at all. I felt like the nightmare had started all over again. But sure enough when I walked in on Sunday morning, my mom was alert and awake and even asked for a pen so she could write to me! I couldn't believe it! I was so over joyed with happiness! That afternoon they took the breathing tube out and I thought for sure we would be out of there in no time. As you have probably gathered from the date on when I am writing this; that was not the case.
The next week was filled with tests and new doctors, physical therapists, speech therapists. etc. Basically now that the breathing tube was out, we had to deal with all of the aftermath of being intibated and in the ICU for a long period of time. Mary was alert and could talk but only in a faint whisper, she was not able to make a voice. By Friday the 27th they downgraded her from ICU. She was in ICU for 15 days.
One of the challenges Mary has faced since "waking up" has been passing the swallow test so she can eat and drink food. The first round they said she needed to build up her energy and strength. So they put her on an NG tube for feeding and meds shortly after getting her off the respirator. This last week on Tuesday (the 31st) they did another swallow test and unfortunately she did not pass. So they had to do a direct feeding tube to her stomach as you can only have the NG tube in for so long. They told us this tube will have to stay in for 30 days at the minimum.
Basically they said that her muscles are too weak to protect her airway and they don't want her to aspirate, so they went with this option. So that means she is still another month out before we get our pig out party. She has been in good spirits so far and has not let it get her down.
The next steps are for her to go to a re-hab/nursing home facility for her to get her strength back up and also go to speech therapy which will help strengthen her muscles and vocal chords so she can eat again. She is able to walk for short periods of time, so doing PT should also help her with gaining her mobility back.
As of right now she is still at Overlake hospital in Bellevue and it sounds like she will be discharged this week sometime. Maybe as early as tomorrow.
Thank you everyone for all of your thoughts, prayers, love, support, visits, texts, phone calls, emails, etc. We really appreciate it. I will update when Mary gets moved to her temporary home at Providence St. Vincent.