Oh Matt, I'm so sorry to hear that news. I was thinking that this would be THE change, but I'm sure whatever THE change is that it will come soon. My thoughts are with you and your wife. She is a strong woman.
I get in early and the nurse is cleaning her up. I tell her I am her and love her and the move to the machine giving the blood pressure support drugs. YES YES YES down from 22 last night to 10. Thank you Lord. The nurse (Tim) and I hugged each on the and both cried in joy.
We reviewed her blood test numbers all key ones are stable or move in the right direction. Her MELD increase to 40 that is as high as the scale goes. She is defying the normal meaning of that scale.
We still have huge issues to overcome but she if fighting for her life and working to prove the med docs wrong. Keep the prayers and energy coming!
Around lunch time, the head medical doc called the family aside for a review of current state and expectations. His view is Sandra will not make it out of the ICU due to the failing liver which is impacting all other organs. He said the improvement we have seen in the last 2 days is just temporary. There is an infinitesimally small possibility that she will succeed. I understand the message he is delivering but do not accept his outcome as the only possible outcome.
This truly appears to be in God’s hands. He has heard the flood of prayers and support for Sandra. I accept his infinite wisdom that has crafted his plan for her. A miracle or peace, either ways Sandra wins!! I chose to continue to fight for the miracle.
Hang in there Matt. I went through this with my Mom in April when she had a heart attack. I remember some of the same roller coaster of 2 steps forward and one step back that you are seeing as the doctors adjusted medications and protocols. Many days I exited the hospital after 50+ hours there. That next month is still a blur. Your ironman endurance and commitment is showing in your notes.
In my Mom's case she got the miracles. I talked to her this AM. I am praying the same for you... hang in there and don't give up
I have never had the pleasure of meeting Sandra yet, but I remember it was Sandra that squealed first and loudest when you got your Kona roll down in Louisville and her picture of you on the floor, bowled over in disbelief, is still one of my very favorite pics from my time at EN.. Hang in there!!
Around lunch time, the head medical doc called the family aside for a review of current state and expectations. His view is she will not make it out of the ICU due to the failing liver which is impacting all other organs. He said the improvement we have seen in the last 2 days is just temporary. There is an infinitesimally small possibility that she will succeed. I understand the message he is delivering but do not accept his outcome as the only possible outcome.
This truly appears to be in God’s hands. He has heard the flood of prayers and support for Sandra. I accept his infinite wisdom that has crafted his plan for her. A miracle or peace, either ways Sandra wins!! I chose to continue to fight for the miracle.
7/28 Early AM Update
Friday afternoon Sandra was stable. They pulled 2 L of fluid off her abdominal. To potential help with blood pressures and breathing. The abdomen is still showing signs of an non identified infection. As long as that is exist she can’t be transplanted no matter how strong all other factors are.
Early evening I was holding her hand and I felt her gently squeeze my finger. I said Sandra is that you and you could see movement in her eyes. A wave of joy and fear swept through me. Joy that she is still here with us and beginning to come out from under the drug induced fog. Fear that she will suffer as we watch Gods plan unfold.
4 AM Through the night she is stable with some minor improvements in blood pressure allowing them to reduce the pressure medications a little bit more. She is resting now. I had her hand and pray.
7/28 Early Evening Update
I spent most of the morning alone with her Sandra. I talk to her and tell her about all of the people praying for her. I read to her many of the posts on CaringBridge. She continued to show eye motion and movement responses. The eye movement and blood pressure increase when I talk to her. I tell her God has a plan for her. Have no fear you are safe.
Mid day, the teams had made their rounds and today we continue with the multiple antibiotics to get the infection under control. This is right now her most critical situation. I head home early afternoon to get some sleep. Sandra is in good hands with the rest of the family for the afternoon. I will be back to spend the night. As she continues to come out of the fog of the pain meds I want to make sure a known voice is with her to tell her she is loved and safe.
I make it back into the room about 7:30. My brother is watching her, she appears to be sleeping. We change shifts. The nurse make a adjustment to her Blood Pressure down to 6 YES. Building a miracle one day at a time!!!
I stayed the night and it was pretty quiet. Holding my loved ones hand and giving her words of love and encouragement for 12 hours was a pleasure.
Sandra’s blood pressure boosting meds moved around a bit. We were at 6 for the longest time but are at 7 at 8:AM. This is a huge improvement from the 28, 3 days ago. Her White Blood Cell count which hit an off the charts number of 55000 3 days ago has tended down to 33,800 over the last 3 days. Her liver enzymes also improved for the third straight day ( AST 3200 down to 507, ALT 787 down to 365). Hopefully we are making progress on the infection front. Her skin is becoming more yellow as the bilirubin build up in her body. I asked the renal team yesterday if Bilirubin is considered toxic, they said the med world can’t agree!
During the night, she oscillated between times of what seemed like sleep and periods of increased arousal with increase eye, arm and head movements. Overall she is becoming slowly more alert each day.
Her MELD score is 42 which is off the chart which has a max 40. I thought about this and realized that measure does not apply to her kind of liver tumor. The liver doc agreed. I thought to myself what other typical liver disease assumption are the med team making that do not apply to her rare tumor.
I take all the above as continued progress toward our miracle.
Sandra’s special college friend Jill Allen is flying in this morning to see Sandra. I brush her hair and tell her she is beautiful and all ready to go dancing with Jill.
A calm day for the most part. Sandra’s long time friend Jill Allen made it in mid morning. Sandra was in one of her awake moments and the eyes appeared to react to Jill’s voice. Jill talked to Sandra about all the things they done and still needed to enjoy together. The med teams made their rounds and we were in another day of see how the antibiotics work. I left around 1 to get some sleep. Sandra was well support with Mom, Dad, Brother Lee, Mike and Jill. Early afternoon Jeanne and Katie visited Sandra. There are our good friends who we made photographing the baby barn owls in their front yard a few years ago. Around 3PM my brother text me that Sandra was having one of her awake periods. I called, He said her eyes were moving more than before and appeared to respond more to voice.
I made it make to the hospital around 7:00. Checked in with her great nurse Jonathan who we have had 3 nights. I ask him if he felt Sandra was in any discomfort or pain. He answer only when the cleaned the dressings on her arm. I told him let me know if he see this change. He commented I would see it before he would. I settle in for a night with my love.
May God give me the strength and wisdom to make the right decisions for Sandra as our quest for a miracle continues.
7/30 Early AM Update – Stable some progress but getting weaker.
Around 10:30 the arterial line that is used for real time blood pressure reading starts to become finicky. It is very sensitive to wrist position. This may be giving artificially low data that is used for adjusting the Blood Pressure medication. The nurse orders up some pain meds to help with changing out the line dressing. He gets this done relatively quickly.
Around midnight Sandra tosses in a new trick to keep us on our toes. She changes heart rhythm. They do an EEG and see that she has this rhythm before. She goes back to normal after 30 min.
We do her bath and linen change at 5 AM. I tell her we are getting her fixed up for Jill again today. The nurse gives her a little pain med. She has both eyes open for that fun event, no grimace is shown.
Overall we stayed steady on the blood pressure meds at an 8. Blood tests showed with blood cell count, liver enzymes and other items again moving in the right direction 4th day in a row. The only thing to get worse is the Bilirubin number.
There is still nothing of significance processing through the gut. The thought is this is shut down due to the blood pressure meds that constrict the extremity blood vessels Only ~300 calories of sugar is going into her a day to keep blood sugar levels stable. So no effective food for multiple days now. Not good, she is getting weaker by the day.
Will see if they plan to check the infection in the abdomen today or tomorrow.
Toward the end of the night shift, the Blood pressure med pump alarmed. It said treatment complete!!! This means no added drugs were going into her???? I knew her pressures would fall quickly if this continued. I jumped out of the room and found her nurse who quickly restarted the machine set a new unit of meds in place. Too close!!!
The teams made their rounds mid to late morning. The liver team agreed she was making progress but still held to their view that transplantation is extremely unlikely. I said I understand and told them to keep putting the new targets in front of Sandra and we will get them done. I said once we get off the blood meds, the next hurdle will be you will say she is too weak. He said yep. I asked how do we get started on feeding her again? Talk to the med team was the answer. The team chose to wait for a couple more days to check the abdominal infection. That is fine – let the antibiotics work.
The nero team came through and checked Sandra out, they saw improvement. They said once she is a bit better in a couple of days they want to do a follow up CT of the head just to rule out any issues.
The med team made their rounds and new attending physician started. They agreed it was time to put a feeding tube back in. This got done but no food was given during the day due to incorrect position of the tube. It will get fixed tomorrow. The hurry up and wait cycle is so frustrating when time is not on Sandra’s side. I ask about current seizure meds. They say the nero team asked for her to be on her old home pill dosages. I asked in anyone explained to the nero team that the pills are not being absorbed by the gut and that we need to be on an IV based med until that is resolved. Around and around that discussion went. The new main doc said , I agree with what you are requesting and put it in place.
I left at 1 PM to get some sleep.Made it back in 5:30 and was pleased to see her Blood Pressure meds were down to 4. YES a new low!!! During the afternoon she had a couple of her “awake periods” with bolt eyes open and moving. Her friend Jill was there for those events. The night nurse went though her routine and we are now set for the long evening.
Keep the prayers coming! Sandra’s miracle is building in front of our eyes.
Matt, I've been quiet for most of this, but I'm very much following your story and keeping you in my thoughts. Your strength and patience is incredible, and I'm hoping all the best for you and Sandra. Keep the fight on!!
A calm night. The blood pressure meds went back to 5 for the night. This is still good considering we were at 28 a few days ago. Sandra slept most of the night with interspersed periods of open eyes and eye movement. Eye lid action was improving. By early morning she had both eyes fully closed which has not been a normal state. Her blood tests showed continued improvement on all fronts except for bilirubin. Day 5 of improvements!!! Her MELD is still at 40 but that is down from 42 yesterday.
I bring in my sleep pattern monitoring gear. It is a small headband set of sensors that collects alpha and delta waves from the brain and transmits it bake to my smart phone. It monitors and graphs in real-time her sleep stages. Awake, light sleep, REM and deep sleep. I use this for my ironman training to monitor fatigue levels and aid recovery. I wanted to see what was going on with hers sleep patterns and awake periods. As the evening and day gets tracked, I see Sandra is still running the reversed sleep pattern. More awake at night and asleep during the day. At 6:30 AM she went into deep sleep and stayed there until 11 AM. So for the times that the docs come by and examine her and they say she is unresponsive , a key factor is she is sound asleep!!
Today the mission will be to get feeding started and discuss getting some fluid off the swelling body.
The family team is changing up a bit today. Sandra’s little sister Lisa will make it in today from Couth Carolina. Jill headed home on an early flight. Lee will pick up Lisa at the airport and delay their trip to home until tomorrow.
The Chaplin made his rounds early this am. He has been in most every day and has been an aid to Bill. We talked about how Sandra is progressing. He said “ something big is happening in this room, this is beyond what man and medicine can do. I wish I could say I see this more often.”
The med teams make their rounds and they start to see the progress. The agree to take fluid off Sandra with the dialysis machine. We get the feeding tube repositioned and by mid afternoon we are feeding her. Yes Progress on both fronts!! I show the teams the sleep data charts and they are surprised but say that makes sense – thank you .
Mid morning the liver doc for the week comes though. He is the youngest of the team. He spends most of his time telling be that he cannot see how Sandra will recover enough to ever get a transplant. I say I understand. He does a quick listen to her chest and tummy and heads over to the desk to make his notes. I wait for him to finish and ask for 2 min of his time. I tell him that for 7 day now he has told me Sandra will not make it. I understand the message he has done that part of his job. I ask him if he had watched the movie Apollo 13 where the “Houston we have a problem” sequence occurred. The team worked outside the box to solve a seemingly impossible situation and save the astronauts lives. I said from today forward we will not waste time focusing on the negative, we will focus our discussion on the activities that the liver team is taking to get Sandra ready for a transplant. Is this clear!!!! He says yes he understands. We will see what tomorrow’s visit brings.
Lee and family plus Sandra’s sister make in close to noon. Sandra as asleep. Lee tells me about his experience with the restaurant Chick Fil A that morning. Lee has a big Chick Fil A habit. He first went to the one close to where they are staying last Friday. The person behind the counter heard the strong Southern accents and asked what brought them into town. Lee told them about Sandra. They responded that they would like to supply diner for the family and friends at no charge and they would even make the hour round trip drive to deliver the food. Lee was surprised at the generous offer and declined. Lee stopped by the Chick Fil A this AM for his morning fix of sweet tea and chicken nuggets. The lady behind the counter pulled out a piece of paper from her pocket with Sandra’s name and the hospital. She asked again could the provide lunch for the family. Lee accepted this time and they packed up enough chicken, fruit, chips and desert plus plates and utensils for 10 people. Wow Back to the Chaplin’s comment of something special is happening here!!!
In the late afternoon, the nurse said Sandra had some strong awake periods with greater eye movements and awareness. He was genuinely happy. We make the shift change between nurses and I settle in for the evening.
What a great day when the balance between hope and fear makes a significant swing!!
A quiet night over all. Sandra rested well with some periods of eyes open and movement. The feeding and fluid reduction protocols continued.The only intense moment was again when the blood pressure medicine machine alarmed. I went into the hall and saw no nurses. I started repeating "need some help here now", louder each time. The third repeat elicited a response. The nurse quickly changed out the med bag and we we going again. In that 20 seconds Sandra's BP fell noticeably but not far enough to cause any harm.
Blood tests showed a mixed view. White blood cell count up slightly (may just be noise in the testing), liver enzymes improved again. Blood clotting a bit worse and Biliruben improved for the first time.
We were stable on the blood pressure meds for the night at a 10. Not what we want but not bad either.
I expect another "continue as is day" from the med teams.
I keep the faith that Sandra will win!
8/2 Early Evening Update - Set Backs
The late morning and afternoon have not gone in the direction we would like. Her dialysis machine acted up and the filter was changed out and the machine restarted around 9:30. When it was restarted her heart rate went from 93 to 127 and her blood pressure meds went from 9 to 14. Not what we wanted. During the afternoon this progression continued with more BP meds needed to keep the pressures up. By 4:00 PM we were up to 27 on the meds! The docs came in and did a review and some tests. An EKG showed that her heart is “fluttering”. Meaning it is trying to do 4 beats and only 1 is pushing blood through the system. This is what is driving the need for the high amounts of blood pressure meds. The doc say we just have to wait and see if Sandra will go back to normal rhythm.
Through the afternoon she had her eyes open quite a bit and seem to respond to Jane and Lisa’s chatting. I played her some eagle call sound clips and the eyes showed some response to these.
Around 5:30 they clean her up and change all dressings. During the final reposition in the bed, her Dialysis lines get pulled out a couple of inches. They have to remove the lines. We discuss putting them back in now or in the early AM. We agree to let her rest now and see if the heart rhythm corrects itself and go for a morning procedure.
It is 6:30 and she has closed her eyes and appears to be resting comfortably. We wait to see what our Lord has planned for Sandra tonight.
A challenging night for Sandra. Blood pressure and breathing were a battle as the evening went along. She is currently at 37 on the blood pressure medication. This is a significant new high. She had multiple respiratory challenges though the evening. The most significant was a 4 AM. This session raised her oxygen setting on the vent to 100%. I called her mom Jane and sister Lisa to come in as I felt she was not going to be with us much longer. They arrived in 40 min. For the next 2.5 hours she has been relatively stable. She is now in a position she is being keep alive by the machines.
I have a lengthy discussion with early morning doc what options. They have their standard protocol for these situations. He explains and I ask questions and make comments. He finally agrees that that is not the right path for Sandra. He starts to understand what I am pressing for ( there are no fluids in the system for the pressers to work on or to transport O2 to the system) which is to add volume. He said he would bring it up at rounds. I catch the attending Doc and quickly have the same discussion. He agrees with my thought process. This may just be a delaying of the probable outcome.
I discuss with the doc and nurse what are the approaches for turning off machines. I understand our options.
I struggle with when to say enough intervention by man and machine. I struggle with saying she is done fighting before she says she is done. I can hear Sandra say I have been in hell for 6 months and to take me out of the game before the last inning I wanted to play. I can also hear her say let me rest. What is the right answer??? We will likely never know. God has given me the strength to make the decision, I just pray that god gives me guidance for the right timing.
I pray that divine intervention will make the decision not necessary.
8/3 afternoon update
Sandra is now at peace. She passed with no pain mid afternoon today.
I am also at peace with my decisions today. When my brain clears I will provide an update on the day.
Matt, Words cannot express my sympathy for your tremendous loss! Don't second guess your decision though...you have fought with and for Sandra for so long and you made the right call with all the information available to you. The days ahead will be just as hard in a different way, and we will all still be praying for you.
Comments
Matt my heart aches for you. You and Sandra are in my thoughts and prayers.
Keep the faith!
Sandra is Top of the list, condition is very critical. Liver team agrees to move forward with high risk transplant.
We can see the finish line - no stopping now!!!
Praying the circle of life reveals a donor liver in the next day or two.
This is not good news
posted in the main post.
Thank you for all the prayers and support.
Matt
For those that never met Sandra. Bright eyes and big smile and her love of nature summed up in 2 pics.
On a Galapagos potography trip.
7/27 Early AM – Positive moves for a second day.
I get in early and the nurse is cleaning her up. I tell her I am her and love her and the move to the machine giving the blood pressure support drugs. YES YES YES down from 22 last night to 10. Thank you Lord. The nurse (Tim) and I hugged each on the and both cried in joy.
We reviewed her blood test numbers all key ones are stable or move in the right direction. Her MELD increase to 40 that is as high as the scale goes. She is defying the normal meaning of that scale.
We still have huge issues to overcome but she if fighting for her life and working to prove the med docs wrong. Keep the prayers and energy coming!
I will update more later today.
Around lunch time, the head medical doc called the family aside for a review of current state and expectations. His view is Sandra will not make it out of the ICU due to the failing liver which is impacting all other organs. He said the improvement we have seen in the last 2 days is just temporary. There is an infinitesimally small possibility that she will succeed. I understand the message he is delivering but do not accept his outcome as the only possible outcome.
This truly appears to be in God’s hands. He has heard the flood of prayers and support for Sandra. I accept his infinite wisdom that has crafted his plan for her. A miracle or peace, either ways Sandra wins!! I chose to continue to fight for the miracle.
Matt I am there with you.
Hang in there Matt. I went through this with my Mom in April when she had a heart attack. I remember some of the same roller coaster of 2 steps forward and one step back that you are seeing as the doctors adjusted medications and protocols. Many days I exited the hospital after 50+ hours there. That next month is still a blur. Your ironman endurance and commitment is showing in your notes.
In my Mom's case she got the miracles. I talked to her this AM. I am praying the same for you... hang in there and don't give up
I have never had the pleasure of meeting Sandra yet, but I remember it was Sandra that squealed first and loudest when you got your Kona roll down in Louisville and her picture of you on the floor, bowled over in disbelief, is still one of my very favorite pics from my time at EN.. Hang in there!!
7/27 Mid Day Update
Around lunch time, the head medical doc called the family aside for a review of current state and expectations. His view is she will not make it out of the ICU due to the failing liver which is impacting all other organs. He said the improvement we have seen in the last 2 days is just temporary. There is an infinitesimally small possibility that she will succeed. I understand the message he is delivering but do not accept his outcome as the only possible outcome.
This truly appears to be in God’s hands. He has heard the flood of prayers and support for Sandra. I accept his infinite wisdom that has crafted his plan for her. A miracle or peace, either ways Sandra wins!! I chose to continue to fight for the miracle.
7/28 Early AM Update
Friday afternoon Sandra was stable. They pulled 2 L of fluid off her abdominal. To potential help with blood pressures and breathing. The abdomen is still showing signs of an non identified infection. As long as that is exist she can’t be transplanted no matter how strong all other factors are.
Early evening I was holding her hand and I felt her gently squeeze my finger. I said Sandra is that you and you could see movement in her eyes. A wave of joy and fear swept through me. Joy that she is still here with us and beginning to come out from under the drug induced fog. Fear that she will suffer as we watch Gods plan unfold.
4 AM Through the night she is stable with some minor improvements in blood pressure allowing them to reduce the pressure medications a little bit more. She is resting now. I had her hand and pray.
7/28 Early Evening Update
I spent most of the morning alone with her Sandra. I talk to her and tell her about all of the people praying for her. I read to her many of the posts on CaringBridge. She continued to show eye motion and movement responses. The eye movement and blood pressure increase when I talk to her. I tell her God has a plan for her. Have no fear you are safe.
Mid day, the teams had made their rounds and today we continue with the multiple antibiotics to get the infection under control. This is right now her most critical situation. I head home early afternoon to get some sleep. Sandra is in good hands with the rest of the family for the afternoon. I will be back to spend the night. As she continues to come out of the fog of the pain meds I want to make sure a known voice is with her to tell her she is loved and safe.
I make it back into the room about 7:30. My brother is watching her, she appears to be sleeping. We change shifts. The nurse make a adjustment to her Blood Pressure down to 6 YES. Building a miracle one day at a time!!!
I stayed the night and it was pretty quiet. Holding my loved ones hand and giving her words of love and encouragement for 12 hours was a pleasure.
Sandra’s blood pressure boosting meds moved around a bit. We were at 6 for the longest time but are at 7 at 8:AM. This is a huge improvement from the 28, 3 days ago. Her White Blood Cell count which hit an off the charts number of 55000 3 days ago has tended down to 33,800 over the last 3 days. Her liver enzymes also improved for the third straight day ( AST 3200 down to 507, ALT 787 down to 365). Hopefully we are making progress on the infection front. Her skin is becoming more yellow as the bilirubin build up in her body. I asked the renal team yesterday if Bilirubin is considered toxic, they said the med world can’t agree!
During the night, she oscillated between times of what seemed like sleep and periods of increased arousal with increase eye, arm and head movements. Overall she is becoming slowly more alert each day.
Her MELD score is 42 which is off the chart which has a max 40. I thought about this and realized that measure does not apply to her kind of liver tumor. The liver doc agreed. I thought to myself what other typical liver disease assumption are the med team making that do not apply to her rare tumor.
I take all the above as continued progress toward our miracle.
Sandra’s special college friend Jill Allen is flying in this morning to see Sandra. I brush her hair and tell her she is beautiful and all ready to go dancing with Jill.
Will update later in the day.
Matt, we are thinking of Sandra and you each day. Sending every possible good wish and thought your way.
7/29 Early Evening Update
A calm day for the most part. Sandra’s long time friend Jill Allen made it in mid morning. Sandra was in one of her awake moments and the eyes appeared to react to Jill’s voice. Jill talked to Sandra about all the things they done and still needed to enjoy together. The med teams made their rounds and we were in another day of see how the antibiotics work. I left around 1 to get some sleep. Sandra was well support with Mom, Dad, Brother Lee, Mike and Jill. Early afternoon Jeanne and Katie visited Sandra. There are our good friends who we made photographing the baby barn owls in their front yard a few years ago. Around 3PM my brother text me that Sandra was having one of her awake periods. I called, He said her eyes were moving more than before and appeared to respond more to voice.
I made it make to the hospital around 7:00. Checked in with her great nurse Jonathan who we have had 3 nights. I ask him if he felt Sandra was in any discomfort or pain. He answer only when the cleaned the dressings on her arm. I told him let me know if he see this change. He commented I would see it before he would. I settle in for a night with my love.
May God give me the strength and wisdom to make the right decisions for Sandra as our quest for a miracle continues.
7/30 Early AM Update – Stable some progress but getting weaker.
Around 10:30 the arterial line that is used for real time blood pressure reading starts to become finicky. It is very sensitive to wrist position. This may be giving artificially low data that is used for adjusting the Blood Pressure medication. The nurse orders up some pain meds to help with changing out the line dressing. He gets this done relatively quickly.
Around midnight Sandra tosses in a new trick to keep us on our toes. She changes heart rhythm. They do an EEG and see that she has this rhythm before. She goes back to normal after 30 min.
We do her bath and linen change at 5 AM. I tell her we are getting her fixed up for Jill again today. The nurse gives her a little pain med. She has both eyes open for that fun event, no grimace is shown.
Overall we stayed steady on the blood pressure meds at an 8. Blood tests showed with blood cell count, liver enzymes and other items again moving in the right direction 4th day in a row. The only thing to get worse is the Bilirubin number.
There is still nothing of significance processing through the gut. The thought is this is shut down due to the blood pressure meds that constrict the extremity blood vessels Only ~300 calories of sugar is going into her a day to keep blood sugar levels stable. So no effective food for multiple days now. Not good, she is getting weaker by the day.
Will see if they plan to check the infection in the abdomen today or tomorrow.
7/30 Evening update – Blood Pressure meds continuing lower.
Toward the end of the night shift, the Blood pressure med pump alarmed. It said treatment complete!!! This means no added drugs were going into her???? I knew her pressures would fall quickly if this continued. I jumped out of the room and found her nurse who quickly restarted the machine set a new unit of meds in place. Too close!!!
The teams made their rounds mid to late morning. The liver team agreed she was making progress but still held to their view that transplantation is extremely unlikely. I said I understand and told them to keep putting the new targets in front of Sandra and we will get them done. I said once we get off the blood meds, the next hurdle will be you will say she is too weak. He said yep. I asked how do we get started on feeding her again? Talk to the med team was the answer. The team chose to wait for a couple more days to check the abdominal infection. That is fine – let the antibiotics work.
The nero team came through and checked Sandra out, they saw improvement. They said once she is a bit better in a couple of days they want to do a follow up CT of the head just to rule out any issues.
The med team made their rounds and new attending physician started. They agreed it was time to put a feeding tube back in. This got done but no food was given during the day due to incorrect position of the tube. It will get fixed tomorrow. The hurry up and wait cycle is so frustrating when time is not on Sandra’s side. I ask about current seizure meds. They say the nero team asked for her to be on her old home pill dosages. I asked in anyone explained to the nero team that the pills are not being absorbed by the gut and that we need to be on an IV based med until that is resolved. Around and around that discussion went. The new main doc said , I agree with what you are requesting and put it in place.
I left at 1 PM to get some sleep.Made it back in 5:30 and was pleased to see her Blood Pressure meds were down to 4. YES a new low!!! During the afternoon she had a couple of her “awake periods” with bolt eyes open and moving. Her friend Jill was there for those events. The night nurse went though her routine and we are now set for the long evening.
Keep the prayers coming! Sandra’s miracle is building in front of our eyes.
Please keep the reports coming. We are reading, and Sandra is in all of our thoughts and prayers.
A calm night. The blood pressure meds went back to 5 for the night. This is still good considering we were at 28 a few days ago. Sandra slept most of the night with interspersed periods of open eyes and eye movement. Eye lid action was improving. By early morning she had both eyes fully closed which has not been a normal state. Her blood tests showed continued improvement on all fronts except for bilirubin. Day 5 of improvements!!! Her MELD is still at 40 but that is down from 42 yesterday.
I bring in my sleep pattern monitoring gear. It is a small headband set of sensors that collects alpha and delta waves from the brain and transmits it bake to my smart phone. It monitors and graphs in real-time her sleep stages. Awake, light sleep, REM and deep sleep. I use this for my ironman training to monitor fatigue levels and aid recovery. I wanted to see what was going on with hers sleep patterns and awake periods. As the evening and day gets tracked, I see Sandra is still running the reversed sleep pattern. More awake at night and asleep during the day. At 6:30 AM she went into deep sleep and stayed there until 11 AM. So for the times that the docs come by and examine her and they say she is unresponsive , a key factor is she is sound asleep!!
Today the mission will be to get feeding started and discuss getting some fluid off the swelling body.
The family team is changing up a bit today. Sandra’s little sister Lisa will make it in today from Couth Carolina. Jill headed home on an early flight. Lee will pick up Lisa at the airport and delay their trip to home until tomorrow.
The Chaplin made his rounds early this am. He has been in most every day and has been an aid to Bill. We talked about how Sandra is progressing. He said “ something big is happening in this room, this is beyond what man and medicine can do. I wish I could say I see this more often.”
The med teams make their rounds and they start to see the progress. The agree to take fluid off Sandra with the dialysis machine. We get the feeding tube repositioned and by mid afternoon we are feeding her. Yes Progress on both fronts!! I show the teams the sleep data charts and they are surprised but say that makes sense – thank you .
Mid morning the liver doc for the week comes though. He is the youngest of the team. He spends most of his time telling be that he cannot see how Sandra will recover enough to ever get a transplant. I say I understand. He does a quick listen to her chest and tummy and heads over to the desk to make his notes. I wait for him to finish and ask for 2 min of his time. I tell him that for 7 day now he has told me Sandra will not make it. I understand the message he has done that part of his job. I ask him if he had watched the movie Apollo 13 where the “Houston we have a problem” sequence occurred. The team worked outside the box to solve a seemingly impossible situation and save the astronauts lives. I said from today forward we will not waste time focusing on the negative, we will focus our discussion on the activities that the liver team is taking to get Sandra ready for a transplant. Is this clear!!!! He says yes he understands. We will see what tomorrow’s visit brings.
Lee and family plus Sandra’s sister make in close to noon. Sandra as asleep. Lee tells me about his experience with the restaurant Chick Fil A that morning. Lee has a big Chick Fil A habit. He first went to the one close to where they are staying last Friday. The person behind the counter heard the strong Southern accents and asked what brought them into town. Lee told them about Sandra. They responded that they would like to supply diner for the family and friends at no charge and they would even make the hour round trip drive to deliver the food. Lee was surprised at the generous offer and declined. Lee stopped by the Chick Fil A this AM for his morning fix of sweet tea and chicken nuggets. The lady behind the counter pulled out a piece of paper from her pocket with Sandra’s name and the hospital. She asked again could the provide lunch for the family. Lee accepted this time and they packed up enough chicken, fruit, chips and desert plus plates and utensils for 10 people. Wow Back to the Chaplin’s comment of something special is happening here!!!
In the late afternoon, the nurse said Sandra had some strong awake periods with greater eye movements and awareness. He was genuinely happy. We make the shift change between nurses and I settle in for the evening.
What a great day when the balance between hope and fear makes a significant swing!!
A quiet night over all. Sandra rested well with some periods of eyes open and movement. The feeding and fluid reduction protocols continued.The only intense moment was again when the blood pressure medicine machine alarmed. I went into the hall and saw no nurses. I started repeating "need some help here now", louder each time. The third repeat elicited a response. The nurse quickly changed out the med bag and we we going again. In that 20 seconds Sandra's BP fell noticeably but not far enough to cause any harm.
Blood tests showed a mixed view. White blood cell count up slightly (may just be noise in the testing), liver enzymes improved again. Blood clotting a bit worse and Biliruben improved for the first time.
We were stable on the blood pressure meds for the night at a 10. Not what we want but not bad either.
I expect another "continue as is day" from the med teams.
I keep the faith that Sandra will win!
8/2 Early Evening Update - Set Backs
The late morning and afternoon have not gone in the direction we would like. Her dialysis machine acted up and the filter was changed out and the machine restarted around 9:30. When it was restarted her heart rate went from 93 to 127 and her blood pressure meds went from 9 to 14. Not what we wanted. During the afternoon this progression continued with more BP meds needed to keep the pressures up. By 4:00 PM we were up to 27 on the meds! The docs came in and did a review and some tests. An EKG showed that her heart is “fluttering”. Meaning it is trying to do 4 beats and only 1 is pushing blood through the system. This is what is driving the need for the high amounts of blood pressure meds. The doc say we just have to wait and see if Sandra will go back to normal rhythm.
Through the afternoon she had her eyes open quite a bit and seem to respond to Jane and Lisa’s chatting. I played her some eagle call sound clips and the eyes showed some response to these.
Around 5:30 they clean her up and change all dressings. During the final reposition in the bed, her Dialysis lines get pulled out a couple of inches. They have to remove the lines. We discuss putting them back in now or in the early AM. We agree to let her rest now and see if the heart rhythm corrects itself and go for a morning procedure.
It is 6:30 and she has closed her eyes and appears to be resting comfortably. We wait to see what our Lord has planned for Sandra tonight.
8/2 Early AM update
8/03 Early AM Update
A challenging night for Sandra. Blood pressure and breathing were a battle as the evening went along. She is currently at 37 on the blood pressure medication. This is a significant new high. She had multiple respiratory challenges though the evening. The most significant was a 4 AM. This session raised her oxygen setting on the vent to 100%. I called her mom Jane and sister Lisa to come in as I felt she was not going to be with us much longer. They arrived in 40 min. For the next 2.5 hours she has been relatively stable. She is now in a position she is being keep alive by the machines.
I have a lengthy discussion with early morning doc what options. They have their standard protocol for these situations. He explains and I ask questions and make comments. He finally agrees that that is not the right path for Sandra. He starts to understand what I am pressing for ( there are no fluids in the system for the pressers to work on or to transport O2 to the system) which is to add volume. He said he would bring it up at rounds. I catch the attending Doc and quickly have the same discussion. He agrees with my thought process. This may just be a delaying of the probable outcome.
I discuss with the doc and nurse what are the approaches for turning off machines. I understand our options.
I struggle with when to say enough intervention by man and machine. I struggle with saying she is done fighting before she says she is done. I can hear Sandra say I have been in hell for 6 months and to take me out of the game before the last inning I wanted to play. I can also hear her say let me rest. What is the right answer??? We will likely never know. God has given me the strength to make the decision, I just pray that god gives me guidance for the right timing.
I pray that divine intervention will make the decision not necessary.
8/3 afternoon update
Sandra is now at peace. She passed with no pain mid afternoon today.
I am also at peace with my decisions today. When my brain clears I will provide an update on the day.
Thank you all for the amazing support.
Matt