It's been way too long since I've worked on this series of blog posts and considering tomorrow marks 11 months since my surgery, I decided to try and catch myself up. You can read the previous 3
entries by clicking on these links
Part 1
Part 2
Part 3
I was released from my first re-admission on September 29th. The rejection was under control thanks to the help of some strong medications and therefore my team felt it was safe to send me back across the street to my apartment. Of course, I would remain under very close supervision and would continue having my labs drawn several times a week to keep an eye on the state of my new liver. I'd be lying if I said I wasn't a little nervous. The word "rejection" just sounded so scary to me, despite the fact that my doctors had assured me everything was going to be alright.
entries by clicking on these links
Part 1
Part 2
Part 3
I was released from my first re-admission on September 29th. The rejection was under control thanks to the help of some strong medications and therefore my team felt it was safe to send me back across the street to my apartment. Of course, I would remain under very close supervision and would continue having my labs drawn several times a week to keep an eye on the state of my new liver. I'd be lying if I said I wasn't a little nervous. The word "rejection" just sounded so scary to me, despite the fact that my doctors had assured me everything was going to be alright.
I was very glad to be out of the hospital once again. Even though I wasn't going home to Jackson, I was just glad to be unhooked from machines and free to make decisions for myself. Little did I know, this freedom would be very short lived.
The next day I noticed a lot of swelling in my abdomen. My ankles and feet were also pretty swollen, to the point it was getting to be painful. I didn't think too much of it but as the day went on it got much worse. Pretty soon my abdomen was so tight that I could barely take a breath and was struggling to breathe at all. Even talking in a low whisper was very difficult and it just exhausted me. It was very unpleasant but I was determined I was NOT going back to that hospital---especially not after just ONE day of freedom. However, that afternoon things took a very scary turn. The swelling in my abdomen got so intense that it caused my ileostomy to prolapse which was the scariest sight I have ever seen. Not only was it awful to see, but it was extremely painful. The pressure in my belly from the swelling had gotten so bad that I was experiencing a form of pain I had never known. My breathing got more and more shallow and my prolapse got more and more painful. I had several serious issues going on and my Mom and I were scared....really scared!
She called my team and of course they said to bring me back right away. However, I was in so much pain that I wasn't even able to get up and get into the car. Not only that, each time I tried to stand up I would lose consciousness and begin passing out. For some reason that's just my body's natural way of dealing with pain, and at that moment I was in a LOT of it. Mom only had one choice left and that was to call an ambulance. It seemed very silly since we were within walking distance to the hospital but there was no way she could get me there by herself. She needed serious help an I needed serious relief from this pain!! It felt like my belly was going explode and with my prolapse, it felt like my intestines were going to fall out of my body. It was terrible.
I don't remember much about that day (or the next few days, really) because I just kept going in and out of consciousness. I do remember that when the ambulance arrived, they were unable to get to my apartment door and they had to carry me through the parking lot on a stretcher and into the back of the ambulance. They asked me my name and basic information and I wasn't even able to give it to them. Between the pain and the lack of oxygen, I was unable to speak. In reality the ride across the street to Vanderbilt was less than 5 minutes but with every bump and turn it seemed longer and longer. I truly thought I was dying.
Being a transplant patient, I got immediate VIP treatment once I arrived in the ER. They were expecting me and were prepared for my arrival. The first order of business was getting an IV started and filling my aching body full of pain medication. They never stopped doing this and each time it would wear off they gladly gave me more. For this reason, the next few days are a complete blur. I've had to ask my Mom and Matthew for a lot of the information I'm including.
They began by taking blood cultures, doing a chest x-ray to look at my lungs and then they called in a colorectal surgeon to address my prolapse. Even with the pain medication, I was still hurting from my rapidly growing belly. Not only was the pressure painful, but it felt as though my staples in my incision were pulling apart. (Now, looking at my scar 11 months later I can see that they in fact were pulling!!) They needed to find the source of the swelling and get it stopped FAST. The colorectal surgeon was able to temporarily fix my prolapse with some seriously uncomfortable pressure on my belly, followed by wrapping my entire abdomen with a tight stretchy band. I had to wear this indefinitely to keep the prolapse from happening again. So, the counter pressure of this band around my waist only added to my uncomfortable and miserable state.
Somewhere during the course of the chaotic trip to the ER, my friend Glory made her debut in Nashville. A few days prior when I received my call for transplant, she immediately booked a flight from Houston to Nashville to come and spend time with me. She purposely scheduled her visit a little later out to ensure that I would be discharged from the hospital so that she and I could just spend time together at my apartment as I recovered. HA! God must have laughed at our plan because our plan definitely did not work out the way we had hoped. But as always, looking back I am SO thankful that His was better. God knew that I would need Glory in a big way over the next several days. In case you didn't know, Glory is a trauma nurse and could not be more well suited for the job of care taker, especially during the most critical part of this entire crazy journey.
What I remember about seeing my best friend can only be described as seeing an angel standing in the doorway of my room in the ER. I was foggy but I was conscious enough to know it was her and through my pain, my heart smiled. She walked straight over to me with a look of concern I've never seen on her face, hugged me, and started praying over me. Apparently she was not prepared for the serious nature of my condition and what she saw was not what she expected.
I didn't want to share this picture because it's just so awful but this is what Glory saw as she walked into the ER. I was unconscious from all of the pain medicine and just LOOK at that belly!
I was transferred from the ER directly to the ICU and later that night, still hooked up to pain pump and oxygen to help with my breathing. I had a CT scan in the middle of the night in order to better diagnose the swelling. Early the next morning my team made their rounds and told me that there were two areas on my CT which looked like infection. They were diagnosing me with bacterial peritonitis, which is an infection within the peritoneum, the thin tissues that line the inner wall of the abdomen and cover most of the abdominal organs. The team wasn't sure exactly how I got the infection, but told me it could have been something as simple as a small amount of bacteria or contamination on the donor liver when it was transplanted. Whatever it was, it had to be treated with some heavy antibiotics. The antibiotics would not take down the swelling but they would at least kill the infection which was causing it. They told me that they would likely tap the fluid off with a procedure called a paracentesis. This would not only give me some relief from the swelling but also allow them to test the fluid and see what type of bacteria was present.
More unflattering pictures of my swollen belly. I'm so glad I don't remember any of this.
The paracentesis was HORRIFYING. Because my belly was so swollen and my incision so tight, I could only roll half way onto my side and therefore was in a very uncomfortable position to begin with. A group of many doctors dressed in blue paper gowns paper hats and masks came walking into my room and it wasn't until they asked Glory and my Mom to step out that I realized I was about to have a pretty serious procedure done. They used an ultrasound to find the pockets of fluid and I felt the needle as they poked it deep into my back. It was excruciating but I could INSTANTLY feel my lungs fill up with air. As painful as this procedure was, I was finally given some relief from all of the pressure on my chest and I could BREATHE.
Setting up for the paracentesis
Once the paracentesis was over I was able to see exactly what it was that was causing all of that pain. THIS!!!
That's 2.5 liters of infection. YUCK.
Unfortunately, the relief from this procedure was very brief and the fluid reappeared just as quickly as it left. Once again I was unable to breathe, talk or move due to the extreme swelling. Glory never left my side, taking such tender care of me. I have been told she gave me a sponge bath in my bed. Thankfully I do not recall this because if you know me at all then you also know that I am the most modest person you will ever meet. Here she is wetting my mouth with a sponge during the time that I was on fluid restrictions. I remember being SO thirsty and my mouth being parched yet they would not let me have any fluids due to the fluid retention in my body.
Glory wasn't afraid to jump in there and take care of me in the little ways which were really big ways---Like washing my hair, helping me brush my teeth, getting me ice chips, etc. I think she even changed my sheets once when the nurses were too busy. I don't know what I would have done without her. It definitely wasn't the way I imagined us spending her visit, but as I said previously, I couldn't be more thankful that she was there for me when I needed her MOST.
Glory also allowed my Mom to get some much needed rest and they took turns staying at the hospital with me. Between the two of them, someone was with me at all times since I was in such a helpless state. Being a nurse, Glory was even bold enough to join the doctors in their "huddles" outside my room each morning as they discussed my case. She would then come back in and tell me what they had talked about. It's great having a nurse as a best friend!
Here is a great picture of (most of) my transplant team doing rounds. The three on the right are all transplant surgeons and the two on the left are hepatologists. Dr. Scanga who has been my hepatologist for two and a half years is on the far left. I've since been released from the surgical team but I will always see Dr. Scanga.
Along with the return of the fluid came some weird readings in my lab work. So, another CT was done on October 2nd to check the status of the fluid and also to check for internal bleeding since my blood counts were low. The CT showed that the fluid had settled in my lungs but thankfully there was no bleeding. I was given a blood transfusion to get my counts back up where they needed to be. It was October 2nd and I hadn't eaten a single bite of food since September 23rd. This was by my own choosing, simply because it felt as though there was not a single spot in my belly for anything else. Plus, I was afraid that if I ate anything, my ileostomy would prolapse again and that was not something I wanted any part of. The doctors sent in a transplant dietician to talk to me but the only thing I agreed to try was a sip of Boost. And a sip is all I took. I was so swollen yet so dehydrated. My arms were completely purple all the way around from all of the attempts at IV sticks and daily blood draws.
Thankfully, my liver functions remained stable and there was no danger to my new gift at this point. Another paracentesis was done but unfortunately this time I did not get any relief. They drained off 1.5 liters but I still struggled to breathe or even sit up straight for fear my incision would pop wide open from all the pressure. They increased my pain medications, stopped all IV fluids and began giving me diuretics. I was struggling, to say the least!
Many times my breathing would be so difficult and so shallow that I would panic and almost hyperventilate, despite being hooked up to oxygen. It's a scary feeling when you think you're suffocating! Because of this, a thoracentesis was ordered and 8 ounces of fluid around my lungs was drained. Once again it wasn't pretty and there was some pretty "yucky" (doctor's words) stuff hanging out in there. I felt some relief this time, and I was so thankful for the small improvement. For the first time I was able to back off on my pain pump and therefore was conscious for more than 10 minutes at a time.
That night around midnight I was awakened by my nurse with the awful news that I was about to have an NG tube dropped into my belly. Amazingly, in all my adventures in the hospital over the years I had never experienced this. And I never want to again!!!! What an awful, awful feeling. Not to mention that I had to live with this thing hanging out of my nose and down the back of my throat for an indefinite amount of time. There were tears, blood and lots of "yuck" as this tube sucked buckets and buckets of junk from my belly.
NG tube selfie complete with nosebleed at approximately 1:00 a.m.
While all of this was going on, Kyndall was safe and sound back in Jackson with Matthew and his Mom. Matthew would continue to bounce back and forth between Jackson and Nashville so that he could be at work as much as possible. On this day, Kyndall was coming to visit me for the first time since my transplant. I hadn't seen her since four days after my transplant when I surprised her and showed up at her birthday party in Jackson. My heart was aching to see her, hold her, smell her and hear tell me all about her adventures with Nonie.
Here she is at our house on the morning she left Jackson to come see me in Nashville! (10/3/14)
This is also the day that I had to say goodbye to Glory. She had been with me the whole week and now it was time for her to leave. I was sad to see her go, but eternally grateful for her sacrificial love and friendship. I will never be able to repay her for all she did for me.
Thankfully I had several visitors that day, including sweet friends from church. Stephanie and her husband Drew stopped by on their way to Knoxville, as well as my friend LaShon. Later I had a visit from a high school friend, Jenna, who happens to live in Nashville. She brought me an Icee and it was the first thing I had eaten in almost two weeks!! It was definitely a bittersweet day.
A visit from Stephanie did my heart such good!
Jenna knew the way to my heart with this treat!
My Mom and I were treated to a little music therapy late one evening by these sweet, lovely and talented girls. The perks of being hospitalized in Nashville, I suppose!
CLICK HERE TO LISTEN
I was so excited to see Kyndall's sweet face come walking into my room later that night!!! The BEST medicine!
CLICK HERE TO SEE A VIDEO OF OUR REUNION
She climbed up on my bed with me as if she didn't even see the tubes and drains and monitors, handed me a card that she had so carefully crafted and gave me the best hug. She was careful not to push on my belly and she knew that mommy was "fragile". We had been very open with her throughout the entire process up to this point. From the day I was told I would need a liver transplant we have explained everything to her in a way that she could understand and included her in the process. I realize this may not work for every child, but for Kyndall it is what she needed. We realized early on that she functions and deals with things better when we are open and honest with her, rather than sugar coating it. There were some things she didn't know (and still doesn't), such as the fact that someone had to die in order for me to have their liver. In time she will come to realize that on her own. All of this to say she wasn't one bit phased by all of my "accessories"!
Here's a copy of the update that my Mom posted on Saturday October 4th......
"It is always slow on the weekends so no procedures done today but she continues to have a LOT of fluid in her tissues which makes her very uncomfortable. She has difficulty walking because the fluid makes her skin tight. She is still not eating because she feels there is just no room for anything. She is very tired of being poked with needles for blood draws and for new IVS and for fluid aspiration. She is tired of being closed up in a hospital room for almost two weeks. Some of the side effects of the meds she is experiencing are tremors and emotional highs and lows. She hasn't slept much in the last two weeks either. Just pray specifically for the things I have mentioned here and we thank you!"
That day, October 4th, is a day I will NEVER forget. It's the day that I broke. I've never had an emotional "episode" quite like this before but looking back I realize it was bound to happen at some point. As much as I wanted to fool everyone, I was not Super Woman. I was human and I was hurting. By this time I was two and a half weeks post transplant yet remained caged inside the walls of the 7th floor of the critical care tower at Vanderbilt Hospital. I was weary, discouraged, angry, disappointed and lonely. I longed for the comforts of home---The day-to-day familiar sights, sounds smells and routines. I missed those little things so bad it hurt. I can remember hanging my head in my hands and sobbing, telling my Mom that I just wanted to go outside and see the leaves changing and to feel the fall air on my skin. Fall is my favorite time of year and I was watching it pass me by from the window of my prison cell, also known as the transplant floor. I was jealous of all the pictures I was seeing on Facebook of friends taking their kids to the pumpkin patch, picking out Halloween costumes and enjoying the simple pleasures that I had been guilty of taking for granted in years past. I was angry. Angry that they could do these things and I could not. I had lost my zeal. My hope was shattered and my faith was fading. This may sound dramatic, but rightfully so. I had just been given the gift of a new life, yet I didn't feel new at all. In fact, I felt awful in every way and I said aloud several times that having the transplant was a "mistake that I wish I could take back". Obviously I had no choice if I wanted to live, but in the midst of my sorrow my thoughts were not clear and my emotions ran high. I was in a deep, dark pit and I saw no end in sight.
I ached and longed to be back in my home doing those simple, mundane day-to-day things that I always griped and complained about. Combing the tangles from Kyndall's hair and fighting the bedtime battle with her. Standing at my kitchen sink washing dishes. Doing the family's laundry and sorting out itty bitty little girl clothes. Refilling the dog's bowl. Taking Kyndall to school. Making dinner. Eating dinner. All of these things which I had grumbled about in times past were now sweet memories that were just out of my reach. Oh what I would've given to do some of these things just one more time.
This was my view. Not much to look at. Not even a tree in sight and certainly no beautiful fall foliage.
The most exciting thing that happened each day was seeing the reflection of the helicopter pad as the flight team brought patients in non-stop throughout out the day.
My days consisted of sitting in my hospital bed starring at the ceiling, unable to move or even lift my swollen and aching legs without the help of my Mom or a nurse. By this point I didn't want any visitors because I didn't want anyone to see how awful I looked. My Mom would bring me stacks and stacks of cards from friends and family and I didn't have the energy or desire to open them. I was completely dependent on other people and couldn't even roll over without some kind of assistance. Getting up to walk to the bathroom was a major ordeal, as I could barely support the weight of my own swollen body. Physical therapy came around each day and forced me out of bed and made me walk down the hall. I could only do this with the help of a walker because it felt as though my legs would collapse beneath me from all of the weight. Matthew had to go out and buy me men's size XL pajama pants and t-shirts because nothing I had brought from home would fit any longer. As someone who is already very self conscious about my physical appearance, this only added insult to injury. Not to mention I was on VERY high doses of steroids which are known to make you extremely emotional. My skin had stretched so drastically and so quickly that it was beginning to crack. The high doses of anti-rejection medications caused me to have terrible shakes as well as some serious hallucinations. I heard music playing when nobody else did. I saw the pictures and signs seemingly melting and dripping off my hospital room walls. I truly thought I was losing my mind.
The physical therapists made me leave my room each day and walk the halls. However, I was so embarrassed of how terrible I looked that I only agreed to do it if they would let me stay at the end of the hallway, right in front of my room so that nobody would see me.
Once again, these pictures absolutely make me cringe but they tell the story of just how sick my body really was. I went from 115 pounds to 160 in a matter of a few days. It was all fluid and it was ALL in my belly and my legs.
In this one you can see the site where the thoracentesis was done a few days prior
All of this was compounded on the afternoon of October 4th when Kyndall came bouncing into my room dressed in the sparkly pink Elsa shirt that we had picked out together months ago for this very special day. You see, six months prior I had forked over a ridiculous amount of money in order for our family to attend Disney's Frozen on Ice on this very day. It was to be a special treat for Kyndall's birthday and the three of us had been counting down the days until we headed to Nashville for this long awaited adventure. I had no idea that I would actually spend this day laying in a hospital room while Kyndall enjoyed it without me.
We only had three tickets and obviously I was out. So, Matthew gave up his ticket and allowed the two Grandmothers to take Kyndall to this very special event. As happy as I was that they were making sweet memories together, I couldn't help but feel a little bit cheated and a little bit angry. This was supposed to be OUR day. We had been waiting so long for it. WHY was I robbed of the joy of seeing the sheer elation on Kyndall's face as this special occasion took place?
I didn't let Kyndall see my disappointment but instead kissed her goodbye and sent her on her merry way. She was oblivious to my heartache and I'm glad. I would never want to steal her excitement or make her feel sorry that I wasn't able to go. Nonie and Grammy promised to send me pictures and they did....
Enjoying snacks and souvenirs before the show
When they returned to the hospital she couldn't wait to tell me all about it and show me her souvenirs that she bought with the spending money we sent. It made me happy to see her so happy. There were many, many nights that I would lie awake worrying about her happiness and wondering how all of this would affect the memories of her childhood. It did my heart good to see her happy and excited in the midst of an otherwise awful time.
We sat on my hospital bed and made loom bracelets together before Matthew's Mom took her home for the night and then on to Georgia for the next few weeks. It was the last time I would see her for a while and I just wanted to soak up every second. I remember pressing my nose into the back of her ponytail and breathing in the smell of her soft, clean hair. I didn't want to be separated from her but I really had no choice. I promised her I would wear the bracelet she made me and told her she could call me or Skype me anytime, day or night.
On Monday October 6th after 19 total days spent in the hospital, I was finally released to go back to my apartment across the street. I wasn't feeling much better but my team determined that it was safe to let me go and I wasn't arguing with that.
When I got back to the apartment I had packages and cards galore waiting for me. I didn't have much energy but I sat and opened each one that night, and I was reminded of how many people loved me and were praying me through.
Even Kyndall received gifts!
My sweet and funny friend Bethany sent me this t-shirt! I love it!
My favorite card of all was this one from my precious Kyndall
I spent the next few days resting and trying to begin eating again. I was still dealing with my prolapse as well as all of the fluid retention. There was even talk of another surgery to fix the prolapse. I met with my colorectal surgeon who created my ileostomy in 2013 and he agreed to do a revision whenever my team cleared me for surgery again. That thought was a daunting one. Another surgery.....really?!
I remained unable to lay flat so I slept in a recliner each night, which didn't provide for much rest or comfort. In fact, I spent most of my time in this recliner, only leaving it to use the bathroom. I depended on my Mom for EVERYTHING. I was told to wear compression socks and to keep my feet elevated at all times and I couldn't do either of these simple tasks on my own. If I needed my phone plugged in or a drink of water or something from my suitcase, my Mom had to do it for me. I hated being so dependent on her but I am thankful that she was there, serving me the way she did.
I was very happy that my friend and fellow liver transplant recipient Jay stopped by my apartment while he was in Nashville. It was good to see him and to be reminded of how well I was going to feel....eventually. We had a great visit and enjoyed sharing and comparing our transplant stories, since both of our transplants were done by the same surgeon. Jay was no stranger to complications himself and reminded me of this which made me feel better in a weird sort of way.
On October 8th my Mom posted this update......
"Update for Wednesday 10/8......she had her first follow up clinic visit with the surgeon who procured her new liver and who "installed" it into her! He stated that she wasted no time in starting to reject but that with some more tweaking of her meds, they will eventually find the right level of anti rejection meds for her. He stated that they do not have an explanation for all the fluid she is retaining but did say that she was very sick....his words were "your condition was quite notable". He kidded her about turning his back and her misbehaving. He would not commit to when she can return to Jackson and wants to see her next Wednesday with labs done every Monday, Wednesday, and Friday. She is still weak and fatigues very easily. She has to use a wheelchair to get from valet parking to the lab and to the Drs offices. Her eating is better but she has to eat slow and she eats small portions. They will continue to monitor her closely since she has a bumpy history but they feel they are headed in the right direction."
Meanwhile, Kyndall enjoyed her time in Georgia with Nonie, even accompanying her to work a few days.....
On the days I had labs or clinic visits, Mom and I would usually try to get out and about for a little while. My energy was extremely limited but I figured if I had gone to the effort to get dressed and had made it out of the apartment we might as well take advantage while I was up for it! Mondays, Wednesdays and Fridays I had to be at Vanderbilt by 7:00 in the morning for labs which is EARLY for me, even on a good day. Sometimes we would go get breakfast at Chick-Fil-A or run a few errands while we were out. I usually couldn't last long but anything beat sitting in that recliner all day long.
On this day we made a run to Publix for a few staple items like Cheerios and milk! I hated using the carts and wheelchairs but there was no way I could walk that far, not only because of the fatigue but also because of the pain. I figured most people took one look at my swollen belly and assumed I was just a miserable pregnant lady trying to get her grocery shopping done. I was fine with that assumption! =)
Each day packages and cards and deliveries made their way to my apartment and each one put a huge smile on my face. However, on this day I was very surprised to find out that I had a package with my name on it straight from the Icee headquarters!! My sweet friend Laura had written the Icee people and told them of my love for their delicious Coke Icees and they responded by sending me a care package full of every piece of Icee paraphernalia you could imagine! It will definitely go down as one of my favorite memories!
This picture began circulating on Facebook and many of my friends took to social media telling the Icee company to make me their official "Icee girl". Nothing ever came of it but they did acknowledge my picture and wished me well!
In addition to the packages and cards and deliveries I also had several visitors at my apartment from my friends Anna, Julie, Teresa and Amanda as well as our Sunday School teachers the Dements and the Burlesons. I enjoyed seeing familiar faces and hearing stories of what was going on back home in Jackson.
An update from my Mom on October 10th.....
"Friday October 10th.....not much news since her follow up with her surgeon this past Wednesday. The fluid buildup continues to come down slowly with the help of a diuretic. She tried two nights to sleep in the bed but moaned and cried all night (despite pain meds every four hours) due to stiffness and tightness and pain. She is back to "sleeping" in the recliner. Her muscles are weak and she cannot even step up on a small step like a curb and she needs a wheel chair for any distance. After her labs this morning she requested a Chic Fil A breakfast biscuit so we drove about 6 miles one way to get it. She was able to walk in and sit and enjoy her breakfast. We took a little driving tour on our way back to kill some time before we headed back to the apt where we spend most of our time. Matthew will be coming in late tonight to spend the weekend with us. She continues to get a lot of mail which puts a HUGE smile on her face! Many are filled with special blessings in the form of gift cards and cash. Matthew and Ashleigh-Anne have always been very generous in blessing others and now they are being blessed by so many of you. Every card and every gift is greatly appreciated and we all appreciate the outpouring of love and encouragement we have all received. We are still "on restriction" and have to live in Nashville until her liver team feels her meds are at the perfect level for her! Kyndall is in Thomasville with Matthew's parents and she is having a ball. She understands what is going on but has always been a child that adjusts easily to being out of her routine and we are thankful for that! Ashleigh-Anne has two Drs appt next week so hopefully there won't be much to report till then. Happy Friday to everyone and have a nice weekend!!"
It was only a matter of time before I requested a trip to Target!
More goodies from friends back home in Tallahassee including this Edible Arrangement from my Aunt Cathy
My Tallahassee girlfriends sent me a care package full of all my favorite things---Comfy PJs, sparkly pink flip flops, cozy socks and this VERY special gift which I carried (and still carry) with great pride!
Another friend from Tallahassee, Rebecca, remembered how much I love decorating for the holidays (Fall being my favorite) and sent me a package full of decorations for my apartment! She was also very thoughtful to include some sweet things for my Mom and a birthday gift for Kyndall.
A funny card from Mrs. Katherine Dement
Slowly, my swelling was beginning to go down and I was starting to feel slightly more human. Don't get me wrong I still felt awful but just a lesser version of awful. Mom and I had gotten into a good routine of taking my medications, checking my vitals, checking my blood sugar and keeping a log of everything. Just doing these things several times throughout the day was a full time job in itself. We had grand plans of doing some sight seeing while we were in Nashville but the reality was I just didn't feel like it. Simply taking a shower was a monumental task which zapped my energy for the rest of the day so walking around downtown was just out of the question. I continued to get labs done three times a week and each time things looked better and better. My team was happy with my progress and for the first time I was seeing a light at the end of the tunnel.
On October 15th Matthew came to Nashville for my weekly Wednesday clinic appointment with my surgeon. He usually tried to be there on Wednesdays when we met with Dr. Gorden and I appreciated that. I missed him so much during the week and waited anxiously for those mid-week and weekend visits.
Pushing me around the hospital in my chariot
I got some pretty big news during my clinic visit that day. First, Dr. Gorden said my incision looked healed enough to take the staples out--yay!! As anxious as I was to see those things go, I was a nervous wreck as the nurse removed all 33 of them! I felt queasy and turned my head, unable to look. Even though it had been a month since my surgery I was afraid my incision would open up without the staples in place. Obviously I was well healed and the surgeon even explained that I was stitched on the inside as well. They covered my incision with tiny pieces of tape and told me to continue using Nystatin powder on it to avoid any type of infection. My scar looked great and I was proud of it!
After the nurse taped me up Dr. Gorden came in and delivered the best news to me---I could go HOME!! None of us expected this so we were shocked to receive such wonderful news! He told me the swelling could continue to be treated with lasix and that there was no need for me to stay any longer. I would continue with labs several times a week, but I could have them drawn locally in Jackson. He also decided it would be best to wait on any type of revision surgery to address my ileostomy. He felt that once the swelling was completely gone, so would be the problem of the prolapse. All of my CT scans clearly showed a large pocket of fluid directly beneath my small intestine, which he felt was the reason for the problems. Obviously, I was more than happy to avoid another surgery but I also worried what would happen if the problem didn't resolve itself.
As I walked out of the hospital that day I was almost giddy at the thought of returning home to Jackson. FINALLY, I was free to start my new life!
Mom, Matthew and I scurried back across the street to my apartment and they began the hefty job of packing up all of our things. We had quite a collection of stuff after living there for a month. I was no help at all, as I was still strictly forbidden from doing any kind of lifting. Mom and Matthew loaded down both cars and we bid goodbye to our temporary home at the Village at Vanderbilt.
Here's a video of me delivering the good news to the Facebook world.....
We arrived back in Jackson early that evening and I crashed for the night. I had never been so happy to be back in my own home, my own bed, enjoying the comforts of my own life once again. The nightmare I had been living for the past month was finally turning into a distant memory and I was on my way to a normal, happy life. The only thing missing was Kyndall, but we all agreed it would be best if I had a few days to settle back into my routine before she came bursting back onto the scene full force. For now I was just happy and thankful to be back where I belonged---HOME.
Little did I know, my journey was still far from over.....
The next day I noticed a lot of swelling in my abdomen. My ankles and feet were also pretty swollen, to the point it was getting to be painful. I didn't think too much of it but as the day went on it got much worse. Pretty soon my abdomen was so tight that I could barely take a breath and was struggling to breathe at all. Even talking in a low whisper was very difficult and it just exhausted me. It was very unpleasant but I was determined I was NOT going back to that hospital---especially not after just ONE day of freedom. However, that afternoon things took a very scary turn. The swelling in my abdomen got so intense that it caused my ileostomy to prolapse which was the scariest sight I have ever seen. Not only was it awful to see, but it was extremely painful. The pressure in my belly from the swelling had gotten so bad that I was experiencing a form of pain I had never known. My breathing got more and more shallow and my prolapse got more and more painful. I had several serious issues going on and my Mom and I were scared....really scared!
She called my team and of course they said to bring me back right away. However, I was in so much pain that I wasn't even able to get up and get into the car. Not only that, each time I tried to stand up I would lose consciousness and begin passing out. For some reason that's just my body's natural way of dealing with pain, and at that moment I was in a LOT of it. Mom only had one choice left and that was to call an ambulance. It seemed very silly since we were within walking distance to the hospital but there was no way she could get me there by herself. She needed serious help an I needed serious relief from this pain!! It felt like my belly was going explode and with my prolapse, it felt like my intestines were going to fall out of my body. It was terrible.
I don't remember much about that day (or the next few days, really) because I just kept going in and out of consciousness. I do remember that when the ambulance arrived, they were unable to get to my apartment door and they had to carry me through the parking lot on a stretcher and into the back of the ambulance. They asked me my name and basic information and I wasn't even able to give it to them. Between the pain and the lack of oxygen, I was unable to speak. In reality the ride across the street to Vanderbilt was less than 5 minutes but with every bump and turn it seemed longer and longer. I truly thought I was dying.
Being a transplant patient, I got immediate VIP treatment once I arrived in the ER. They were expecting me and were prepared for my arrival. The first order of business was getting an IV started and filling my aching body full of pain medication. They never stopped doing this and each time it would wear off they gladly gave me more. For this reason, the next few days are a complete blur. I've had to ask my Mom and Matthew for a lot of the information I'm including.
They began by taking blood cultures, doing a chest x-ray to look at my lungs and then they called in a colorectal surgeon to address my prolapse. Even with the pain medication, I was still hurting from my rapidly growing belly. Not only was the pressure painful, but it felt as though my staples in my incision were pulling apart. (Now, looking at my scar 11 months later I can see that they in fact were pulling!!) They needed to find the source of the swelling and get it stopped FAST. The colorectal surgeon was able to temporarily fix my prolapse with some seriously uncomfortable pressure on my belly, followed by wrapping my entire abdomen with a tight stretchy band. I had to wear this indefinitely to keep the prolapse from happening again. So, the counter pressure of this band around my waist only added to my uncomfortable and miserable state.
Somewhere during the course of the chaotic trip to the ER, my friend Glory made her debut in Nashville. A few days prior when I received my call for transplant, she immediately booked a flight from Houston to Nashville to come and spend time with me. She purposely scheduled her visit a little later out to ensure that I would be discharged from the hospital so that she and I could just spend time together at my apartment as I recovered. HA! God must have laughed at our plan because our plan definitely did not work out the way we had hoped. But as always, looking back I am SO thankful that His was better. God knew that I would need Glory in a big way over the next several days. In case you didn't know, Glory is a trauma nurse and could not be more well suited for the job of care taker, especially during the most critical part of this entire crazy journey.
What I remember about seeing my best friend can only be described as seeing an angel standing in the doorway of my room in the ER. I was foggy but I was conscious enough to know it was her and through my pain, my heart smiled. She walked straight over to me with a look of concern I've never seen on her face, hugged me, and started praying over me. Apparently she was not prepared for the serious nature of my condition and what she saw was not what she expected.
I didn't want to share this picture because it's just so awful but this is what Glory saw as she walked into the ER. I was unconscious from all of the pain medicine and just LOOK at that belly!
I was transferred from the ER directly to the ICU and later that night, still hooked up to pain pump and oxygen to help with my breathing. I had a CT scan in the middle of the night in order to better diagnose the swelling. Early the next morning my team made their rounds and told me that there were two areas on my CT which looked like infection. They were diagnosing me with bacterial peritonitis, which is an infection within the peritoneum, the thin tissues that line the inner wall of the abdomen and cover most of the abdominal organs. The team wasn't sure exactly how I got the infection, but told me it could have been something as simple as a small amount of bacteria or contamination on the donor liver when it was transplanted. Whatever it was, it had to be treated with some heavy antibiotics. The antibiotics would not take down the swelling but they would at least kill the infection which was causing it. They told me that they would likely tap the fluid off with a procedure called a paracentesis. This would not only give me some relief from the swelling but also allow them to test the fluid and see what type of bacteria was present.
More unflattering pictures of my swollen belly. I'm so glad I don't remember any of this.
Breathing was a monumental task, even with the oxygen on
The paracentesis was HORRIFYING. Because my belly was so swollen and my incision so tight, I could only roll half way onto my side and therefore was in a very uncomfortable position to begin with. A group of many doctors dressed in blue paper gowns paper hats and masks came walking into my room and it wasn't until they asked Glory and my Mom to step out that I realized I was about to have a pretty serious procedure done. They used an ultrasound to find the pockets of fluid and I felt the needle as they poked it deep into my back. It was excruciating but I could INSTANTLY feel my lungs fill up with air. As painful as this procedure was, I was finally given some relief from all of the pressure on my chest and I could BREATHE.
Setting up for the paracentesis
Once the paracentesis was over I was able to see exactly what it was that was causing all of that pain. THIS!!!
That's 2.5 liters of infection. YUCK.
Unfortunately, the relief from this procedure was very brief and the fluid reappeared just as quickly as it left. Once again I was unable to breathe, talk or move due to the extreme swelling. Glory never left my side, taking such tender care of me. I have been told she gave me a sponge bath in my bed. Thankfully I do not recall this because if you know me at all then you also know that I am the most modest person you will ever meet. Here she is wetting my mouth with a sponge during the time that I was on fluid restrictions. I remember being SO thirsty and my mouth being parched yet they would not let me have any fluids due to the fluid retention in my body.
Glory wasn't afraid to jump in there and take care of me in the little ways which were really big ways---Like washing my hair, helping me brush my teeth, getting me ice chips, etc. I think she even changed my sheets once when the nurses were too busy. I don't know what I would have done without her. It definitely wasn't the way I imagined us spending her visit, but as I said previously, I couldn't be more thankful that she was there for me when I needed her MOST.
Glory also allowed my Mom to get some much needed rest and they took turns staying at the hospital with me. Between the two of them, someone was with me at all times since I was in such a helpless state. Being a nurse, Glory was even bold enough to join the doctors in their "huddles" outside my room each morning as they discussed my case. She would then come back in and tell me what they had talked about. It's great having a nurse as a best friend!
Here is a great picture of (most of) my transplant team doing rounds. The three on the right are all transplant surgeons and the two on the left are hepatologists. Dr. Scanga who has been my hepatologist for two and a half years is on the far left. I've since been released from the surgical team but I will always see Dr. Scanga.
Along with the return of the fluid came some weird readings in my lab work. So, another CT was done on October 2nd to check the status of the fluid and also to check for internal bleeding since my blood counts were low. The CT showed that the fluid had settled in my lungs but thankfully there was no bleeding. I was given a blood transfusion to get my counts back up where they needed to be. It was October 2nd and I hadn't eaten a single bite of food since September 23rd. This was by my own choosing, simply because it felt as though there was not a single spot in my belly for anything else. Plus, I was afraid that if I ate anything, my ileostomy would prolapse again and that was not something I wanted any part of. The doctors sent in a transplant dietician to talk to me but the only thing I agreed to try was a sip of Boost. And a sip is all I took. I was so swollen yet so dehydrated. My arms were completely purple all the way around from all of the attempts at IV sticks and daily blood draws.
Thankfully, my liver functions remained stable and there was no danger to my new gift at this point. Another paracentesis was done but unfortunately this time I did not get any relief. They drained off 1.5 liters but I still struggled to breathe or even sit up straight for fear my incision would pop wide open from all the pressure. They increased my pain medications, stopped all IV fluids and began giving me diuretics. I was struggling, to say the least!
Many times my breathing would be so difficult and so shallow that I would panic and almost hyperventilate, despite being hooked up to oxygen. It's a scary feeling when you think you're suffocating! Because of this, a thoracentesis was ordered and 8 ounces of fluid around my lungs was drained. Once again it wasn't pretty and there was some pretty "yucky" (doctor's words) stuff hanging out in there. I felt some relief this time, and I was so thankful for the small improvement. For the first time I was able to back off on my pain pump and therefore was conscious for more than 10 minutes at a time.
That night around midnight I was awakened by my nurse with the awful news that I was about to have an NG tube dropped into my belly. Amazingly, in all my adventures in the hospital over the years I had never experienced this. And I never want to again!!!! What an awful, awful feeling. Not to mention that I had to live with this thing hanging out of my nose and down the back of my throat for an indefinite amount of time. There were tears, blood and lots of "yuck" as this tube sucked buckets and buckets of junk from my belly.
NG tube selfie complete with nosebleed at approximately 1:00 a.m.
While all of this was going on, Kyndall was safe and sound back in Jackson with Matthew and his Mom. Matthew would continue to bounce back and forth between Jackson and Nashville so that he could be at work as much as possible. On this day, Kyndall was coming to visit me for the first time since my transplant. I hadn't seen her since four days after my transplant when I surprised her and showed up at her birthday party in Jackson. My heart was aching to see her, hold her, smell her and hear tell me all about her adventures with Nonie.
Here she is at our house on the morning she left Jackson to come see me in Nashville! (10/3/14)
This is also the day that I had to say goodbye to Glory. She had been with me the whole week and now it was time for her to leave. I was sad to see her go, but eternally grateful for her sacrificial love and friendship. I will never be able to repay her for all she did for me.
Thankfully I had several visitors that day, including sweet friends from church. Stephanie and her husband Drew stopped by on their way to Knoxville, as well as my friend LaShon. Later I had a visit from a high school friend, Jenna, who happens to live in Nashville. She brought me an Icee and it was the first thing I had eaten in almost two weeks!! It was definitely a bittersweet day.
A visit from Stephanie did my heart such good!
Jenna knew the way to my heart with this treat!
My Mom and I were treated to a little music therapy late one evening by these sweet, lovely and talented girls. The perks of being hospitalized in Nashville, I suppose!
CLICK HERE TO LISTEN
I was so excited to see Kyndall's sweet face come walking into my room later that night!!! The BEST medicine!
CLICK HERE TO SEE A VIDEO OF OUR REUNION
She climbed up on my bed with me as if she didn't even see the tubes and drains and monitors, handed me a card that she had so carefully crafted and gave me the best hug. She was careful not to push on my belly and she knew that mommy was "fragile". We had been very open with her throughout the entire process up to this point. From the day I was told I would need a liver transplant we have explained everything to her in a way that she could understand and included her in the process. I realize this may not work for every child, but for Kyndall it is what she needed. We realized early on that she functions and deals with things better when we are open and honest with her, rather than sugar coating it. There were some things she didn't know (and still doesn't), such as the fact that someone had to die in order for me to have their liver. In time she will come to realize that on her own. All of this to say she wasn't one bit phased by all of my "accessories"!
Here's a copy of the update that my Mom posted on Saturday October 4th......
"It is always slow on the weekends so no procedures done today but she continues to have a LOT of fluid in her tissues which makes her very uncomfortable. She has difficulty walking because the fluid makes her skin tight. She is still not eating because she feels there is just no room for anything. She is very tired of being poked with needles for blood draws and for new IVS and for fluid aspiration. She is tired of being closed up in a hospital room for almost two weeks. Some of the side effects of the meds she is experiencing are tremors and emotional highs and lows. She hasn't slept much in the last two weeks either. Just pray specifically for the things I have mentioned here and we thank you!"
That day, October 4th, is a day I will NEVER forget. It's the day that I broke. I've never had an emotional "episode" quite like this before but looking back I realize it was bound to happen at some point. As much as I wanted to fool everyone, I was not Super Woman. I was human and I was hurting. By this time I was two and a half weeks post transplant yet remained caged inside the walls of the 7th floor of the critical care tower at Vanderbilt Hospital. I was weary, discouraged, angry, disappointed and lonely. I longed for the comforts of home---The day-to-day familiar sights, sounds smells and routines. I missed those little things so bad it hurt. I can remember hanging my head in my hands and sobbing, telling my Mom that I just wanted to go outside and see the leaves changing and to feel the fall air on my skin. Fall is my favorite time of year and I was watching it pass me by from the window of my prison cell, also known as the transplant floor. I was jealous of all the pictures I was seeing on Facebook of friends taking their kids to the pumpkin patch, picking out Halloween costumes and enjoying the simple pleasures that I had been guilty of taking for granted in years past. I was angry. Angry that they could do these things and I could not. I had lost my zeal. My hope was shattered and my faith was fading. This may sound dramatic, but rightfully so. I had just been given the gift of a new life, yet I didn't feel new at all. In fact, I felt awful in every way and I said aloud several times that having the transplant was a "mistake that I wish I could take back". Obviously I had no choice if I wanted to live, but in the midst of my sorrow my thoughts were not clear and my emotions ran high. I was in a deep, dark pit and I saw no end in sight.
I ached and longed to be back in my home doing those simple, mundane day-to-day things that I always griped and complained about. Combing the tangles from Kyndall's hair and fighting the bedtime battle with her. Standing at my kitchen sink washing dishes. Doing the family's laundry and sorting out itty bitty little girl clothes. Refilling the dog's bowl. Taking Kyndall to school. Making dinner. Eating dinner. All of these things which I had grumbled about in times past were now sweet memories that were just out of my reach. Oh what I would've given to do some of these things just one more time.
This was my view. Not much to look at. Not even a tree in sight and certainly no beautiful fall foliage.
The most exciting thing that happened each day was seeing the reflection of the helicopter pad as the flight team brought patients in non-stop throughout out the day.
My days consisted of sitting in my hospital bed starring at the ceiling, unable to move or even lift my swollen and aching legs without the help of my Mom or a nurse. By this point I didn't want any visitors because I didn't want anyone to see how awful I looked. My Mom would bring me stacks and stacks of cards from friends and family and I didn't have the energy or desire to open them. I was completely dependent on other people and couldn't even roll over without some kind of assistance. Getting up to walk to the bathroom was a major ordeal, as I could barely support the weight of my own swollen body. Physical therapy came around each day and forced me out of bed and made me walk down the hall. I could only do this with the help of a walker because it felt as though my legs would collapse beneath me from all of the weight. Matthew had to go out and buy me men's size XL pajama pants and t-shirts because nothing I had brought from home would fit any longer. As someone who is already very self conscious about my physical appearance, this only added insult to injury. Not to mention I was on VERY high doses of steroids which are known to make you extremely emotional. My skin had stretched so drastically and so quickly that it was beginning to crack. The high doses of anti-rejection medications caused me to have terrible shakes as well as some serious hallucinations. I heard music playing when nobody else did. I saw the pictures and signs seemingly melting and dripping off my hospital room walls. I truly thought I was losing my mind.
The physical therapists made me leave my room each day and walk the halls. However, I was so embarrassed of how terrible I looked that I only agreed to do it if they would let me stay at the end of the hallway, right in front of my room so that nobody would see me.
Once again, these pictures absolutely make me cringe but they tell the story of just how sick my body really was. I went from 115 pounds to 160 in a matter of a few days. It was all fluid and it was ALL in my belly and my legs.
In this one you can see the site where the thoracentesis was done a few days prior
I was also still having to wear the band around my belly in order to keep the prolapse under control
All of this was compounded on the afternoon of October 4th when Kyndall came bouncing into my room dressed in the sparkly pink Elsa shirt that we had picked out together months ago for this very special day. You see, six months prior I had forked over a ridiculous amount of money in order for our family to attend Disney's Frozen on Ice on this very day. It was to be a special treat for Kyndall's birthday and the three of us had been counting down the days until we headed to Nashville for this long awaited adventure. I had no idea that I would actually spend this day laying in a hospital room while Kyndall enjoyed it without me.
We only had three tickets and obviously I was out. So, Matthew gave up his ticket and allowed the two Grandmothers to take Kyndall to this very special event. As happy as I was that they were making sweet memories together, I couldn't help but feel a little bit cheated and a little bit angry. This was supposed to be OUR day. We had been waiting so long for it. WHY was I robbed of the joy of seeing the sheer elation on Kyndall's face as this special occasion took place?
I didn't let Kyndall see my disappointment but instead kissed her goodbye and sent her on her merry way. She was oblivious to my heartache and I'm glad. I would never want to steal her excitement or make her feel sorry that I wasn't able to go. Nonie and Grammy promised to send me pictures and they did....
Enjoying snacks and souvenirs before the show
When they returned to the hospital she couldn't wait to tell me all about it and show me her souvenirs that she bought with the spending money we sent. It made me happy to see her so happy. There were many, many nights that I would lie awake worrying about her happiness and wondering how all of this would affect the memories of her childhood. It did my heart good to see her happy and excited in the midst of an otherwise awful time.
We sat on my hospital bed and made loom bracelets together before Matthew's Mom took her home for the night and then on to Georgia for the next few weeks. It was the last time I would see her for a while and I just wanted to soak up every second. I remember pressing my nose into the back of her ponytail and breathing in the smell of her soft, clean hair. I didn't want to be separated from her but I really had no choice. I promised her I would wear the bracelet she made me and told her she could call me or Skype me anytime, day or night.
On Monday October 6th after 19 total days spent in the hospital, I was finally released to go back to my apartment across the street. I wasn't feeling much better but my team determined that it was safe to let me go and I wasn't arguing with that.
When I got back to the apartment I had packages and cards galore waiting for me. I didn't have much energy but I sat and opened each one that night, and I was reminded of how many people loved me and were praying me through.
Candy corn is my favorite fall treat and my sister knew this when she sent this care package!
Even Kyndall received gifts!
My sweet and funny friend Bethany sent me this t-shirt! I love it!
SO. MANY. CARDS.
My favorite card of all was this one from my precious Kyndall
I spent the next few days resting and trying to begin eating again. I was still dealing with my prolapse as well as all of the fluid retention. There was even talk of another surgery to fix the prolapse. I met with my colorectal surgeon who created my ileostomy in 2013 and he agreed to do a revision whenever my team cleared me for surgery again. That thought was a daunting one. Another surgery.....really?!
I remained unable to lay flat so I slept in a recliner each night, which didn't provide for much rest or comfort. In fact, I spent most of my time in this recliner, only leaving it to use the bathroom. I depended on my Mom for EVERYTHING. I was told to wear compression socks and to keep my feet elevated at all times and I couldn't do either of these simple tasks on my own. If I needed my phone plugged in or a drink of water or something from my suitcase, my Mom had to do it for me. I hated being so dependent on her but I am thankful that she was there, serving me the way she did.
I was very happy that my friend and fellow liver transplant recipient Jay stopped by my apartment while he was in Nashville. It was good to see him and to be reminded of how well I was going to feel....eventually. We had a great visit and enjoyed sharing and comparing our transplant stories, since both of our transplants were done by the same surgeon. Jay was no stranger to complications himself and reminded me of this which made me feel better in a weird sort of way.
On October 8th my Mom posted this update......
"Update for Wednesday 10/8......she had her first follow up clinic visit with the surgeon who procured her new liver and who "installed" it into her! He stated that she wasted no time in starting to reject but that with some more tweaking of her meds, they will eventually find the right level of anti rejection meds for her. He stated that they do not have an explanation for all the fluid she is retaining but did say that she was very sick....his words were "your condition was quite notable". He kidded her about turning his back and her misbehaving. He would not commit to when she can return to Jackson and wants to see her next Wednesday with labs done every Monday, Wednesday, and Friday. She is still weak and fatigues very easily. She has to use a wheelchair to get from valet parking to the lab and to the Drs offices. Her eating is better but she has to eat slow and she eats small portions. They will continue to monitor her closely since she has a bumpy history but they feel they are headed in the right direction."
Meanwhile, Kyndall enjoyed her time in Georgia with Nonie, even accompanying her to work a few days.....
Nonie and Poppie made sure she had plenty of fun things to keep her mind from worrying about me, including a trip to Wild Adventures in Valdosta.
I received sweet pictures like this one of a bouquet of flowers she picked just for me and they lifted my spirits the way nothing else could. I missed my girl like crazy but I knew she was being well taken care of and that she was happy.
On the days I had labs or clinic visits, Mom and I would usually try to get out and about for a little while. My energy was extremely limited but I figured if I had gone to the effort to get dressed and had made it out of the apartment we might as well take advantage while I was up for it! Mondays, Wednesdays and Fridays I had to be at Vanderbilt by 7:00 in the morning for labs which is EARLY for me, even on a good day. Sometimes we would go get breakfast at Chick-Fil-A or run a few errands while we were out. I usually couldn't last long but anything beat sitting in that recliner all day long.
On this day we made a run to Publix for a few staple items like Cheerios and milk! I hated using the carts and wheelchairs but there was no way I could walk that far, not only because of the fatigue but also because of the pain. I figured most people took one look at my swollen belly and assumed I was just a miserable pregnant lady trying to get her grocery shopping done. I was fine with that assumption! =)
Each day packages and cards and deliveries made their way to my apartment and each one put a huge smile on my face. However, on this day I was very surprised to find out that I had a package with my name on it straight from the Icee headquarters!! My sweet friend Laura had written the Icee people and told them of my love for their delicious Coke Icees and they responded by sending me a care package full of every piece of Icee paraphernalia you could imagine! It will definitely go down as one of my favorite memories!
This picture began circulating on Facebook and many of my friends took to social media telling the Icee company to make me their official "Icee girl". Nothing ever came of it but they did acknowledge my picture and wished me well!
In addition to the packages and cards and deliveries I also had several visitors at my apartment from my friends Anna, Julie, Teresa and Amanda as well as our Sunday School teachers the Dements and the Burlesons. I enjoyed seeing familiar faces and hearing stories of what was going on back home in Jackson.
An update from my Mom on October 10th.....
"Friday October 10th.....not much news since her follow up with her surgeon this past Wednesday. The fluid buildup continues to come down slowly with the help of a diuretic. She tried two nights to sleep in the bed but moaned and cried all night (despite pain meds every four hours) due to stiffness and tightness and pain. She is back to "sleeping" in the recliner. Her muscles are weak and she cannot even step up on a small step like a curb and she needs a wheel chair for any distance. After her labs this morning she requested a Chic Fil A breakfast biscuit so we drove about 6 miles one way to get it. She was able to walk in and sit and enjoy her breakfast. We took a little driving tour on our way back to kill some time before we headed back to the apt where we spend most of our time. Matthew will be coming in late tonight to spend the weekend with us. She continues to get a lot of mail which puts a HUGE smile on her face! Many are filled with special blessings in the form of gift cards and cash. Matthew and Ashleigh-Anne have always been very generous in blessing others and now they are being blessed by so many of you. Every card and every gift is greatly appreciated and we all appreciate the outpouring of love and encouragement we have all received. We are still "on restriction" and have to live in Nashville until her liver team feels her meds are at the perfect level for her! Kyndall is in Thomasville with Matthew's parents and she is having a ball. She understands what is going on but has always been a child that adjusts easily to being out of her routine and we are thankful for that! Ashleigh-Anne has two Drs appt next week so hopefully there won't be much to report till then. Happy Friday to everyone and have a nice weekend!!"
It was only a matter of time before I requested a trip to Target!
More goodies from friends back home in Tallahassee including this Edible Arrangement from my Aunt Cathy
My Tallahassee girlfriends sent me a care package full of all my favorite things---Comfy PJs, sparkly pink flip flops, cozy socks and this VERY special gift which I carried (and still carry) with great pride!
Another friend from Tallahassee, Rebecca, remembered how much I love decorating for the holidays (Fall being my favorite) and sent me a package full of decorations for my apartment! She was also very thoughtful to include some sweet things for my Mom and a birthday gift for Kyndall.
A funny card from Mrs. Katherine Dement
Slowly, my swelling was beginning to go down and I was starting to feel slightly more human. Don't get me wrong I still felt awful but just a lesser version of awful. Mom and I had gotten into a good routine of taking my medications, checking my vitals, checking my blood sugar and keeping a log of everything. Just doing these things several times throughout the day was a full time job in itself. We had grand plans of doing some sight seeing while we were in Nashville but the reality was I just didn't feel like it. Simply taking a shower was a monumental task which zapped my energy for the rest of the day so walking around downtown was just out of the question. I continued to get labs done three times a week and each time things looked better and better. My team was happy with my progress and for the first time I was seeing a light at the end of the tunnel.
On October 15th Matthew came to Nashville for my weekly Wednesday clinic appointment with my surgeon. He usually tried to be there on Wednesdays when we met with Dr. Gorden and I appreciated that. I missed him so much during the week and waited anxiously for those mid-week and weekend visits.
Pushing me around the hospital in my chariot
I got some pretty big news during my clinic visit that day. First, Dr. Gorden said my incision looked healed enough to take the staples out--yay!! As anxious as I was to see those things go, I was a nervous wreck as the nurse removed all 33 of them! I felt queasy and turned my head, unable to look. Even though it had been a month since my surgery I was afraid my incision would open up without the staples in place. Obviously I was well healed and the surgeon even explained that I was stitched on the inside as well. They covered my incision with tiny pieces of tape and told me to continue using Nystatin powder on it to avoid any type of infection. My scar looked great and I was proud of it!
After the nurse taped me up Dr. Gorden came in and delivered the best news to me---I could go HOME!! None of us expected this so we were shocked to receive such wonderful news! He told me the swelling could continue to be treated with lasix and that there was no need for me to stay any longer. I would continue with labs several times a week, but I could have them drawn locally in Jackson. He also decided it would be best to wait on any type of revision surgery to address my ileostomy. He felt that once the swelling was completely gone, so would be the problem of the prolapse. All of my CT scans clearly showed a large pocket of fluid directly beneath my small intestine, which he felt was the reason for the problems. Obviously, I was more than happy to avoid another surgery but I also worried what would happen if the problem didn't resolve itself.
As I walked out of the hospital that day I was almost giddy at the thought of returning home to Jackson. FINALLY, I was free to start my new life!
Mom, Matthew and I scurried back across the street to my apartment and they began the hefty job of packing up all of our things. We had quite a collection of stuff after living there for a month. I was no help at all, as I was still strictly forbidden from doing any kind of lifting. Mom and Matthew loaded down both cars and we bid goodbye to our temporary home at the Village at Vanderbilt.
Here's a video of me delivering the good news to the Facebook world.....
We arrived back in Jackson early that evening and I crashed for the night. I had never been so happy to be back in my own home, my own bed, enjoying the comforts of my own life once again. The nightmare I had been living for the past month was finally turning into a distant memory and I was on my way to a normal, happy life. The only thing missing was Kyndall, but we all agreed it would be best if I had a few days to settle back into my routine before she came bursting back onto the scene full force. For now I was just happy and thankful to be back where I belonged---HOME.
Little did I know, my journey was still far from over.....
You are such an inspiration to so many.
ReplyDeleteRead this whole post, was captivated and left speechless. Glad you didn't give up on telling the whole story! Love ya girl.
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