Sunday, August 28, 2016

Happy Birthday, Mom!

Today, August 28, marks an extremely important day for my Mom and our family: Mom's 51st birthday! If I remember correctly, last year she was either in the hospital or recently had been for her 50th birthday. Last year could have been Mom's last birthday here with us, but here we are again--better than ever. ----------------------------------------------------------------------------------------------------------------------------------------------------- I learned yesterday that Mom was much closer to losing her battle pre-op than I had known. She was considered too sick to have the surgery, but doctors took a leap of faith which paid off by sparing my wonderful mother's life. I am away at school until Christmas and would love to be celebrating this extra-incredible birthday--one she was so close to not having--with her, but I surely will next year (and all those following)! --------------------------------------------------------------------------------------------------------------------------------------------------- Today I was blessed to FaceTime my Mom from halfway across the country. For the first time since leaving for school I actually got to see her face--and boy is she looking good! As much as we would have loved for her to be able to celebrate at home, that will have to wait until next year. In the meantime, she has participated in intensive physical and occupational therapies which have paid off tremendously. For the past year she has had a printout hanging above her hospital room door featuring a pair of red high heels and the words "fall risk." Her hospital beds have been alarmed should she be stubborn enough to try and move about the room independently (she never did!). She has not even been able to use a toilet. But now, she has been cleared for independence! She is walking without assistance, no bed alarm, is able to roll herself over in bed, and with this re-found independence is able to get herself to and from the restroom. The progress is exhausting, but it is monumental! I'd say being so independent by now is a birthday gift second only to being home--one she accepts gladly. --------------------------------------------------------------------------------------------------------------------------------------------------- I got to talk face-to-face(ish) with Mom and hear all about her day. The family got together and threw her a "party" in the nursing home's conference room. They played penny poker and my grandmother made a cake. Mom ate a steak dinner reminiscent of a hockey puck (but she knows eating is important to her recovery SO...) as her birthday dinner. My stepfather delivered the card I had left on the kitchen table before leaving for school (It was a cute Mother's Day card she was not quite "with it" enough to process on Mother's Day. I told her that it should work because she is my mother and today is her day). --------------------------------------------------------------------------------------------------------------------------------------------------- Mom has been more active on Facebook these last few days than she has been in awhile. For having missed out on her day in person, I loved seeing the pictures she posted. I know she is so grateful for all the love she has received today and along the way. Today I trust that it thrilled her to share a picture holding a number 1 birthday candle, saying that this is her first birthday. After all she has been through, it certainly feels as though this is the first and the best. --------------------------------------------------------------------------------------------------------------------------------------------------- As I look back on today and Mom's journey, I have to say once more just how thankful I am to her donor and her donor's family. Mom has been given great gifts in her 51 years--some tangible, some not--but this amazing person and her family have given my Mom and our entire family the gift that will last through all Mom's birthdays. Every birthday in this family will see thankfulness for the gift of my Mom's life. Every Christmas will be the same. --------------------------------------------------------------------------------------------------------------------------------------------------- And so, once again, I say: HAPPY BIRTHDAY MOM! I LOVE YOU, AND I CAN'T WAIT FOR ALL THOSE YET TO COME! XOXO

Monday, August 8, 2016

Still Not Easy

Exactly one month ago, I hit the "publish" button to tell you all the news that Mom got her new liver. But let me be clear: Times are still very hard.
I have informed everybody that progress will be slow (Although her appearance has improved so much since the surgery). Mom has been in a nursing home in Westport for several weeks now; We've joked about how this is her longest stay out of the hospital. My visits have not typically coincided with her therapies, but several times I have witnessed her walking both short and long (All things considered) distances. We are thrilled with the progress she is making, as well as at her determination.
On Saturday, though, Mom was once again transported to Yale New Haven Hospital. We were warned that short-term hospitalization is possible post-transplant if her team feels that she needs closer monitoring or that her levels may be off. Although Mom's doctors feel she is healing well, she felt as though something was wrong and tests agreed. For several days her belly had been swollen as it was before the surgery--something very uncomfortable for her. It has caused her extra pain.
Given this information, her doctors at the nursing home first ordered an X-Ray. The X-ray appeared to show a bowel obstruction. Mom's doctors at Yale later determined that this was not the case. Mom spent 7 hours in the Yale emergency room while they ran tests and leaned toward infection as a possible explanation--A suspition again deemed untrue. Now, when Mom is taken to Yale we are accustomed to it being a "simple" immediate admittance to their liver and transplant floor. The emergency room is an *almost* unfamiliar situation these days. Now that she has been there two days, the doctors feel they know what has caused this. It appears that the donor liver may have been strained, and the body and liver are trying to play catch-up, causing this swelling and discomfort. THIS DOES NOT MEAN OR OTHERWISE INDICATE THAT MOM'S BODY IS REJECTING THE LIVER.
If I may, I would like to speak more about how things are still not easy for my family--Not just for my Mom. The big picture tells us that Mom will heal, even if it takes awhile. But still, it is so hard even to be on my family's end of this. It is hard walking into Mom's room and watching her cry because of how much pain she is in. It is hard having no choice but to push her to eat, drink, and move no matter how unappealing or exhausting it is for her. It is hard having to wear a paper gown and gloves while visiting, knowing that at any moment we could still bring in germs that would make her and her suppressed immune system very very sick. It is hard trying to tell her a two-minute story and having her drift off to sleep for lack of energy. It is hard knowing that she has no voice and no independence, and questioning if the staff is actually taking care of her once we leave for the day (Understaffing is a serious problem, and while we are visiting it is very apparent that they are so often unable to take appropriate care of her). It is hard having to drive an hour or close to an hour for a visit every single day. It is hard, now that Mom is back at Yale, knowing that the city of New Haven charges a mint for parking simply to visit a sick loved one (When Mom was in Yale long-term before the transplant, the city's parking cost about $400/driver/month for the amount of time we spent visiting Mom. Absolutely absurd). It is hard for us now because it was hard before. It is like so much has changed and still nothing has changed. We just need to rest on the faith that it will.
There is one more thing I feel the need to discuss: The wonderful donor who saved my Mom's life. A couple of weeks ago I was blessed to attend Mom's donor's memorial service with my family. We did not know this young woman personally, but our families knew each other. It was so hard being there, and such a privilege as well. We are sitting here watching my Mom struggle in her recovery, but at the same time we are truly grieving for the loss of this amazing young woman who saved my Mom and so many others with her gift. We are grappling with the gravity of the situation from our end and her family's--The gift and the cost. We will repeat it a million times over: We are so grateful for this family and the decision they made to help us in the midst of unspeakable grief.
Thank you all for walking with us through this time. This may not be the last hospitalization as Mom heals (In fact, it very likely will not be), but your prayers, happy thoughts, and support have carried s through so much. We will continue to keep you posted on her road to recovery.

Monday, July 18, 2016


It's been about a week and a half since Mom received her transplant. Her coloring has improved entirely, and much of her swelling has decreased. Day by day, we are watching the amazing things a new liver has made possible. ----------------------------------------------------------------------------------------------------------------------------------------------------- In this time, Mom has been transferred from the surgical ICU back to the liver and transplant unit, where she has been met with many sentiments of congratulations. Her doctors have been monitoring her closely. They are very pleased with the progress being made. The other day, they operated again because her blood levels were not evening out quite like doctors wished. We were told the day of her transplant that this was common, and after this second operation things proceeded on track. ----------------------------------------------------------------------------------------------------------------------------------------------------- People keep asking if I feel a big weight lifted off of my shoulders. I cannot speak for my family, but (weirdly enough) I say yes and no. The biggest weight is gone; Mom WILL make a full recovery from this terrible disease. But what people may not realize is that she is still very sick. The liver is functioning fully and will help as her body heals, but her body has suffered so much damage that it will not bounce back quickly. She is still suffering great pain and discomfort. She still has only a weak voice. She is still short of breath and unfocused. She is still experiencing confusing dreams and hallucinations (something doctors say is common when the body has gone through such severe trauma). Her skin is still paper thin. She is still incontinent. It will be a long road ahead of us with a light at the end of the tunnel though; You can all be sure to see more and more positive updates coming your way. ----------------------------------------------------------------------------------------------------------------------------------------------------- For the rough things Mom is still experiencing, there are some personal victories and freedoms that she is thrilled to have back. After spending most of her disease on very strict fluid restriction, she can now consume however much fluid she desires--a freedom we all take for granted. The same goes for salt; She has been extremely restricted on this all-too-common ingredient, which has caused a great deal of frustration while her appetite has been limited throughout her disease. Yesterday, she recorded all of her calories and asked me to add them up for her. She ate OVER 2,000 calories. THIS IS A HUGE DEAL! Liver disease made her very malnourished between a low appetite and (at times) inability to hold things down. Proper nourishment is very important to her recovery, and for her to have consumed what most people do in a day is tremendous progress. ----------------------------------------------------------------------------------------------------------------------------------------------------- Doctors are now talking about releasing Mom into another short-term rehab facility in the next couple of days. We are hoping to move her into a Yale-affiliated home where staff is accustomed to working with transplant recipients. Here, she will work with physical, occupational and speech therapists to relearn everything her body has forgotten how to do. From here, she will eventually get to go back home long-term. She will have bi-weekly appointments with the transplant team. They will make her strong, they will keep her safe. She will be a "normal person" again. ----------------------------------------------------------------------------------------------------------------------------------------------------- I cannot wait for the next exciting moment in her journey--There are sure to be many.

Saturday, July 9, 2016

Susie 2.0, Day One

As a family, we are still completely astounded by yesterday's incredible turn of events. There are no words to describe the gratitude we have for our donor, her family, the doctors involved, and God. ----------------------------------------------------------------------------------------------------------------------------------------------------- We only got to see Mom for a few minutes following her surgery yesterday. There were almost two hours between her surgery ending and seeing her in the surgical ICU. We were told to expect Mom to be out of it for awhile. She would be on a respirator at least overnight (thus leaving her unable to speak), and would probably not remember what happened when she saw us--If she was conscious at all. We walked into the room and came to find out that, even though she looked like she was in pretty rough shape, she was very aware. If you are reading and personally know Mom, you know she is strong-willed and (as I like to call her) "sassy." I did not know it was possible to be sarcastic when you cannot even speak. Yesterday evening, she wanted to communicate. Because her voice has been so soft since her last intubation, it is not unusual for her to want to write to communicate. She raised her hand and "scribbled" the air. I told her, "No Mom. You just got out of major surgery. I am not giving you something to write with. You need to rest." And thus, she rolled her eyes and waved her hand in the air to say "whatever." (Way to keep that sense of humor Mom). ----------------------------------------------------------------------------------------------------------------------------------------------------- I got to see Mom again at about 10:00 this morning. The desk staff know my family well by now. They get caught in their scripts just like the rest of us do at work. The woman at the desk this morning was half way through a generic "how are you today" when she looked up and saw me. Her tone changed to a sympathetic one, and said, "Oh no, she's back huh?" I told her, "Today it's for something good. She got her liver transplant yesterday." This woman, whose name I do not even know, has followed our journey in her own way like many of you have. She rejoiced there with me this morning. I've talked about how Mom's doctors, nurses and aides have been an incredible part of our journey, but it is the hospital staff as a whole who have pulled us through. They keep tabs. They mourn. They celebrate each step of the way. We are truly blessed to be in a place where this holds true. ----------------------------------------------------------------------------------------------------------------------------------------------------- I walked in view of Mom's room this morning. If she was alert last night, it was tenfold this morning. I was down the hall from her room when she saw me. I saw her start shaking and crying happy tears. Her breathing tube was out as of 9AM. She had been very concerned that intubation would further damage her vocal cords, yet she was speaking just as well as speech therapy has enabled her to speak so far. I was thrilled to be able to converse with her so soon after surgery, but (of course) talking is one of the more exhausting things she could be doing. She still has nose tubes in (one to feed, and the other to remove stomach contents), but they may be removed in the next few days. She is getting blood transfusions, albumin, and morphine to tame her blood levels and pain. She showed me her "battle scar:" a series of incisions resembling the Mercedes logo across her abdomen. I told her she'll have a cool scar with a great story to match. ----------------------------------------------------------------------------------------------------------------------------------------------------- With speech being extra exhausting, Mom had a stack of papers on her lap with writing all over each of them. She had been using them to communicate all morning. When Rob and my grandparents arrived, Mom used the papers more to communicate with all of us...and eventually to ask us to take a few more pictures to share with each of you. ----------------------------------------------------------------------------------------------------------------------------------------------------- How she looks now is how she looks, but we trust she will be looking better with each passing day. Doctors say that the new liver will act like a car engine that has not been run for awhile. It will stutter for a short time (seemingly "slow" improvement). Then, Mom's health will improve in leaps and bounds. Already, her ascites (stomach swelling) has gone down. The rest will follow. We are blessed for what has already taken place, and look so very forward to everything to come.

Friday, July 8, 2016

Our Miracle Is Here

A year and a half now we have been praying. It has been a year and a half of doctors' visits, an arm's length medication list, hospital visits, hospital admissions, begging for donors, and discouragement. It has been a difficult year and a half. Finally, FINALLY FINALLY FINALLY, we have what we need. ----------------------------------------------------------------------------------------------------------------------------------------------------- Last night, my stepfather stayed the night at the hospital with Mom. There was a woman, a registered organ donor, on life support. Tests were run, and Mom and Rob were given notice that things were not looking good for this individual. This did mean, however, that there was a high likelihood that Mom would be getting her transplant very very soon. ----------------------------------------------------------------------------------------------------------------------------------------------------- This morning, I was asleep when I received a call from mom around 7AM. I have a faint recollection of this call, but I must have been too groggy to answer. A few minutes later, Rob called and I answered. Mom was supposed to be moved back to rehab today, so when I answered Rob said, "Casey, don't go to the nursing home today." "Why not?" "Mom's getting prepped for the OR." "Rob, what's wrong?" "She's getting her transplant." ----------------------------------------------------------------------------------------------------------------------------------------------------- Mom has been as desperate to find a liver as we have been to find her one. I have heard her say time and time again, "I can't wait to get a new liver. It will make me a whole person again. I'll be a normal person again." Yes, it will take time, but Mom will be a normal person again.  ----------------------------------------------------------------------------------------------------------------------------------------------------- We are ELATED! A year and a half of unspeakable grievances are over. This is not over entirely--There is still going to be time in the ICU and therapies to get her good and strong once again. But she is strong enough to make it through this, and she is strong enough to make a full recovery. ----------------------------------------------------------------------------------------------------------------------------------------------------- In the midst of this joy, we are still grieving. When Mom first got sick and had to consider transplantation, she did not know that a living donor was an option. She told us flat-out that as bad as she wanted a liver, she knew that our miracle would be another person's and another family's tragedy. We have very limited information about the person who has just saved Mom's life, but we would like to thank this person and her family. ----------------------------------------------------------------------------------------------------------------------------------------------------- We know that our donor was a young woman. She had been on life support for several days. Someone, somewhere, who we do not know (or we may; Again, we have no names) had heard about Mom and her need for a liver. This woman's family had specifically requested that, if this woman was a match, her liver be given to my Mom. To the young woman whose life ended by giving life to others, we grieve for you and still we thank you with all our hearts. You have not died in vain. To her family if you are reading this, THANK YOU. There are not enough "thank you's" in this world, not enough ways to say it in any language. It is so terrible facing untimely loss; It takes courage we usually do not know where to find. But your choice to direct this donation to my Mom is something we can never repay. ----------------------------------------------------------------------------------------------------------------------------------------------------- We hope that we may be able to pay proper respect to our hero--our heroes. ----------------------------------------------------------------------------------------------------------------------------------------------------- Mom's surgeon came in and spoke to us all just a few minutes ago. She is doing well. The procedure took about six hours and went well with minimum incidence. Just as we think news of a new liver is the most incredible news in the world(It is, but this next bit is still wonderful), her surgeon told us that Mom was Yale-New Haven's 500th liver transplant procedure. The hospital may honor her with some kind of celebration--But as far as we're concerned, the glory should go to the people (all the people) who took part in saving my mother's life. Them, and the wonderful God we serve. ----------------------------------------------------------------------------------------------------------------------------------------------------- Susie's story is not over now that she has a new liver. We have witnessed so many loving people showing their support for Mom. So many prayer warriors and so many well-wishers. We are asked daily how Mom is doing, and we imagine that the questions will persist throughout her recovery. As a family, we wish to continue keeping you all posted. We ask continued prayers for the healing process, for the family whose child, sister, loved one, gave Mom her second chance, for the doctors daily saving lives just as Mom's has been saved today, and for those still waiting on the miracle we have been given. We pray that Mom's testimony might be able to reach the darkest corner to bring even a little light. Hopefully, before long,
Mom will be writing to all of you reading herself. As always, we will keep you posted.

Photos Mom requested Pre-op

Monday, July 4, 2016

Good Things Through Bad Times

I've spent over a month now sharing some painful, terrible things with you all. Pain: That's the dominant emotion controlling our lives right now. On Saturday, Mom was transported from Norwalk Hospital back to Yale. She is, once again, in the liver and transplant unit, 9th floor, west pavilion--a place we have come to know well. Most of Mom's time since early April has been spent in this unit, with several weeks in the ICU and three brief bouts in three different rehab centers. Every time Mom leaves Yale, the medical staff, who know not just her but all of us well, tells her they will miss her but do not want to see her back again...But she always ends up back. ----------------------------------------------------------------------------------------------------------------------------------------------------- Mom has had a very similar problem in the past to the one that has brought her back to Yale this time: Her bloody vomit the other day was caused by three verices (vericose veins inside the body). In the past when this has happened doctors have "banded" the verices to keep them from bleeding any more, but this time they have weighed the risks vs. benefits and opted against taking those measures this time. Also, a few months ago Mom had a "TIPS" procedure in which radiologists placed a shunt in her liver to help blood flow. The shunt is not big enough and has a small blockage, so it has become important for her to have a bigger shunt swapped out for the current one in a "revision procedure." The problem: this is a holiday weekend, and most specialized doctors such as the interventional radiologist do not work weekends or holidays except in emergency circumstances. Mom needs this procedure, but others in the hospital need the interventional radiologists too. She is one of fifty people in need, and therefore cannot get the procedure until tomorrow at the earliest (bearing in mind that this blockage most likely is not a new problem). ----------------------------------------------------------------------------------------------------------------------------------------------------- In addition to this, Mom is hallucinating often. I often hear her say things like "get the sink off the floor," "No thank you. Mom," and "I love you too" while I am alone with her and she is wide awake. These comments are usually followed by "There's no one there, is there?" Or "I'm imagining, aren't I?" Her problems are not strictly medical; She is in a scary and confusing place right now. ----------------------------------------------------------------------------------------------------------------------------------------------------- Hopefully, this will be a quick visit at Yale. We are tired of seeing Mom sent to rehab only to return quickly to Yale. Every time she leaves, we say that we will not be returning until she is there for the transplant surgery. Maybe--just maybe--one of these days that will be true. ----------------------------------------------------------------------------------------------------------------------------------------------------- Enough depressing news, though. There is no good "news," per-se, but good moments and small victories over the past several days. Just before Mom transported to Yale on Saturday, she ate. She has not been eating much at all lately. She finished half a steak with onions, a piece of toast, and half a bowl of cream of wheat all at once. Small victory indeed; We always worry, but we worry that much less when she is able to hold food down. ----------------------------------------------------------------------------------------------------------------------------------------------------- This weekend saw very high spirits in a very low place overall. My stepsisters, Megan and Beth Anne, came from Ohio to visit with Mom. She loved the time with them and enjoyed every minute of it. Yesterday we got to do something as a family that we have not been able to do in a long time: We played a game. Mom's nurse brought in an extra rolling table, we pulled the couch in her room toward the bed, set up the Cranium board, and spent over an hour just playing as though nothing was wrong. We were so blessed for that carefree time. ----------------------------------------------------------------------------------------------------------------------------------------------------- Another shoutout to Mom's medical staff. They are amazing. I made a comment yesterday, about how I'm sure we're not the only ones who cycle through the unit repeatedly. Mom's nurse concurred, but said it's nice because it enables them to build relationships with patients and families. We are lucky to know this to be true, and to have nurses' support and expertise through every ordeal. They make everything possible from us playing our family game yesterday, to keeping Mom comfortable and alive. We are fortunate to have them as a part of this journey.
The girls after a rousing game of Cranium. Mom was a good loser.

Friday, July 1, 2016

Here We Go Again

It's been pretty eventful these last few days. Mom's stay at Yale this time around was only about a week (which certainly beats over a month). Nothing significant happened in this week. Most of it was a hunt for nursing homes. I watched Mom and Rob comb through every possible review for potential nursing homes. There has been too much neglect in past homes to risk settling another time. The list had 16 potential facilities, some good and some bad. Of these 16, only one had a bed for my mom. She was moved to Westport Rehabilitation Complex on Monday afternoon. ----------------------------------------------------------------------------------------------------------------------------------------------------- This rehab facility is okay. The main problem we can see is one we have seen even in Yale: Understaffing, meaning that Mom's needs cannot be met in time for the effort to do any good (when a bedpan is called for, it should NEVER result in the patient wetting themselves and sitting in it over an hour). The technology there is severely outdated, but the therapy is wonderful. It is at least something. ----------------------------------------------------------------------------------------------------------------------------------------------------- Monday through Thursday was fairly smooth sailing. Mom has been on "isolation" for over six weeks. Her immune system is not great right now, so infection is a very serious thing to deal with. She has spent six weeks on IV antibiotics. For her sake and the sake of other immuno-compromised patients, visitors must wear yellow paper gowns and gloves when in her room, and must remove them when leaving. Six weeks is a very long time to battle an infection, but she must be six weeks infection free to have the surgery because the surgery requires immuno-suppressants. Well, she had her last dose of antibiotics yesterday, and is officially off isolation. BUT... ----------------------------------------------------------------------------------------------------------------------------------------------------- Liver disease is ruthless. -----------------------------------------------------------------------------------------------------------------------------------------------------   Mom will never be in the clear--not until she has a new liver, and maybe even then. I received a phone call this morning. She vomited blood last night, and was transported to Norwalk Hospital to evaluate what is going on and most likely to get a paracenthesis ("belly tap") procedure. The doctors found several verices, which were the cause of the last time she vomited blood. We've been here before, watched her vomit blood and had to stand by and trust doctors. We are currently waiting to see if she will end up in Yale once again. We will make it through this and are ever-praying for a liver before it is too late. Asking always for prayers and good thoughts.
(Just a reminder, Mom is "strong like bull" and not planning to give up without a fight!)