Merry Christmas (December 30th)! Best day ever! Alden, Eli, Shell and Scotty did all the things necessary to be able to come safely visit for a little bit! What a special thing to finally spend some time with them. I swear Alden grew by about a foot since I saw him last (which would be October 4th... wowza!). I can't wait to be home again but these family visits are definitely helping to make my time here more tolerable. Miss you all and hope your celebrations were as special as mine have been. Looking forward to seeing what the new year brings us. I have a feeling it's going to be a great one!
It happens to be Missy Monday today! Mom and I are representing our #teammissy gear and knocking out a few appointments, labs and xrays today. Hoping to get the blog back up nd running very soon. Hope everyone is well!
Eli stopped by on Christmas Eve to drop a few things off in preparation for our own family holiday to take place later on. She got to open a few gifts and I got some snuggles from Roh. Counting down the days until I get to have BOTH of my kiddos with me in person!
We were so relieved that the timing worked out perfectly for my discharge from UW to move directly into the apartment at the Transplant House. This has been up in the air since I was admitted back in October and we were looking at having to pay for a hotel for the next month which obviously was not the ideal situation.
But with prayers, phone calls and some advocacy, we got the news that the apartment would be ready and mom was able to check in the day before I was discharge to set everything up with Eli's help.
The apartment is cute and clean! They have a handful of rooms on each floor dedicated to folks that are recovering from transplants so everyone there was pretty familiar with proper cleaning, social distancing, disinfecting, etc. It feels great to be in a more home setting environment but I sure will be happy to be back home again!
I can't believe it. The day has finally come. What a whirlwind of an adventure. I have laughed, cried, bled, worked my a$$ off, had ups and downs and all kinds of surprises and hiccups in my journey. But today is the day. I am being released from University of WA Hospital and moving into the Transplant House with my momma!
We were provided additional training today by several people. The nurses from both the liver and lung post transplant teams met with us to review safety and health precautions. What to look out for, symptoms we shouldn't ignore, timing of my meds, discussions about upcoming appointments. We also met with the pharmacist who made sure I had filled my pill box correctly and reviewed medications once again. We also met with a very nice lady who taught us how to administer medications through a port I still have placed for vancomycin. This medication is necessary for at least another week to get rid of an infection they found in my blood recently. We learned how to prepare everything in a sterile manner, were taught how to use the equipment for the infusions, etc. Both mom and Eli were trained and tested regarding this process and I think they will both do a fantastic job, although they are clearly nervous about this responsibility.
We will be at the Transplant House for at least a month as I continue to be closely monitored and keep up with all of my therapy too build my strength back up. It is exciting but also just a little bit scary. I am used to having someone monitor me closely, 24/7, even while I am sleeping. The thought of that safety net being removed is terrifying if I am being completely honest. Fortunately this move does mean I get my MOMMA back by my side! The last couple of weeks without her have been brutal to say the least.
Eli is coming today to help us get moved and settled into the apartment. She has been tested for Covid and has been quarantining to make this possible and I am so incredibly thankful for her help!
This is one step closer to me being back home with my loved ones. Sleeping in my own bed. Snuggling with my pupper. Meals and bummin' around the house with my mom, Eli and Alden. I am so looking forward to living without being dependent on oxygen tanks and tubes. This is a second chance at life for me and I will NOT take it for granted or have this opportunity be wasted. I'll be seeing you all soon enough!
Ok, ok, ok, are you ready to have your minds blown? Your girl is being discharged from the hospital. TOMORROW!
Ok, let me catch you up. I was moved from the SICU to the 7th floor the night before last. The Team was trying to figure out how to get me to inpatient rehab for a bit, however, the doctors in rehab felt I'm just too darn independent for their services to be beneficial to me. Outpatient rehab will be a better fit so that's the plan.
I do still need IV medications so this morning I had another procedure done to put in a line similar to the dialysis line in my chest and they will teach me how to care for and access that so I can distribute my own medications without having to stay in the hospital.
God is so good and heard our prayers, the Transplant House finally had a bed open and we were able to snatch it up! It is a huge relief to know we will be in an apartment with other immune compromised folks that understand the importance of a clean space. And it is only about a mile from UW, which will be handy since I'll still have multiple visits per week with all the providers here and trying to get as much outpatient rehab in as possible before facing a second liver transplant down the road.
Warriors, I would like to make the request that we please pray for the protection of myself and momma as we transition from a hospital setting to an environment that is more risky for infection and of course COVID-19 exposure.
The photo below is of me on a walk about after lunch today. Its a special one because it is the first time they let me walk the 7th floor loop without a chaperone! Getting stronger every day. We got this!
A week ago today I gave a pretty exciting update about being moved to rehab, one step closer to home. I've found things change at the drop of a hat around here and hope you'll ride this roller coaster with me yet again. A week ago I should have moved to rehab. But then it got too late in the day so they decided to move me the following morning. Turns out this was a blessing in disguise. That night I took another turn in the wrong direction and began showing signs of more complications with my liver. They decided to try to move forward with the ERCP that hadn't been completed at last attempt. I was incredibly nervous about this because of the traumatizing experience with the last procedure. But I prayed and had faith and was wheeled out, thinking I'd get through a successful procedure and be back in my room in an hour or two. Imagine my confusion when I woke up back in the SICU (Surgical Intensive Care Unit) many hours later. I was restrained, intubated and confused. Waiting to have the tube removed was just as awful as it was last time and I waited for the grogginess to wear off so I could wrap my head around what the heck happened.
Remember that pesky bleed that they've suspected but couldn't pinpoint? Well it was back in full force. They began the procedure and ran into active bleeding again. And again the location was escaping them. Talk about de ja vu! So they kept me asleep and wheeled me to radiology where they used a CT scan to locate exactly where it was coming from. Success! They found a hole where I was actively bleeding and were able to repair it! Then they wheeled me to SICU to recover from another exciting and eventful procedure. And let me tell you, this is the thing that has definitely turned around where I'm at in recovery.
That was a week ago and I'm still in SICU, getting stronger every day! My strength and energy levels have more than doubled. My spirits are up and I'm feeling refreshed in this battle. My labs are all either stable or improving. No more evidence of bleeding, just leaps and bounds of improvements. I was medically cleared to leave this unit a few days ago but there are no beds available on the 7th floor right now (the Transplant Unit). So I'm just hanging out in SICU until something opens. OR there is a possibility I could move straight to rehab if that's what the Team decides.
One other hiccup from all of this, is that I did pick up an infection in my blood stream because of the site where I was bleeding. Blood was oozing out and bacteria had found a way in. But they found a treatment that has already cleared up the infection. It is given by IV twice per day and I'll be on a two week course to make sure its all cleared up. But they are confident this will be the last we see of this particular infection. Hopefully I don't pick up any more! Anyhow, this hiccup is worth mentioning because one of the requirements for moving to rehab is that I don't have any IV lines. But I have another 12 days remaining of the treatment and can't have my IV removed until that course is finished. So I may be held up until that is completed in either SICU or Transplant Unit for now.
So now you are caught up but I'm not done with my update yet! Because it is Missy Monday and we all know that's when the miracles really happen, right!? Today marks ten weeks since my transplant. After having your chest opened like I did, you are placed on heavy restrictions as your body tries to mend itself, fusing things back together. The amount of time for those restrictions is ten weeks, meaning today I had those restrictions lifted and have been much more capable in moving myself around. Warriors, I was able to stand on my own for the first time today! DO YOU BELIEVE IN MIRACLES!? I DO!!!!
Rehab and recovery has been the most difficult thing I've ever had to work through. But I put in the sweat, tears and frustration, met those milestones and came out the other side to be able to bask in the results of that hard work! The prayers, determination, faith and encouragement I have gotten from all of you has brought us here and I haven't felt this happy and hopeful in quite some time. Thank you for sticking this out with me. Still a long road ahead but we've come so far and I know I will be home soon! So much love to everyone, keep the faith for #TeamMissy!
So excited to be able to join in on Missy Monday with my very own #teammissy tank top!
Wouldn't you know, another Missy Monday and another Miracle! I just got clearance from cardiology to be moved from the transplant floor up to inpatient rehab TODAY! So I've packed my bags and am prepared for my next step in this healing journey.
Even though I am moving to rehab, one of the kind therapists from this floor took the time to take me out for a short stroll about the unit to keep things moving along. It feels so good to move around a bit and take in the views from different corners of the building. Oh, the adventures!
Love seeing the waves of purple out there! Go team!
Please join me in celebrating this amazing person right here! I've watched her grow up since she blessed me by making me her momma 19 years ago into one of the most phenomenal people I'll ever know. My heart bursts with pride and love when I tell people about her, the things she does, her kindness, compassion, over the top love for dogs, her desire to make the planet and world a better place, her drive to know she should walk her own path when necessary. We have laughed, we have cried, we have lifted each other up. I know and appreciate how blessed I am to call her my daughter.
Happy birthday, Eli. You continue to amaze me and I am so happy I get to watch more of your life unfold as you take on the world. We can't be together now but I'm there in spirit and we've got big celebration make ups to look forward to in the very near future. Enjoy your day baby girl!
Hello, hello, hello from your fellow Warrior! I hope everyone had a wonderful Sunday! I don't have much to report but wanted to check in and let you all know I'm thinking of you and continue to be so appreciative of your love and support!
It was a pretty quiet day today. I continue to remain stable and they are leaning towards moving me back to inpatient rehab tomorrow depending on how tonight goes. So, one step closer to the next step - whatever that may be.
I got some great work in with Pysical Therapy, taking a nice long walk with one of my favorite therapists, Sandi. Still trying to work up my tushie muscles so I can go from sit to stand independently. And that's going well!
Occupational Therapy was kind enough to help me shower today! I feel much more human now, what a difference feeling clean can make for your spirit. Whew!
I've also been cleared to wear my own clothes from home! So I'm feeling more and more like myself and it is amazing! This also means I will be able to join everyone in MISSY MONDAY tomorrow with my very own Team Missy gear! Woo-hoo! I've been able to share some of the Team Missy gear with some of the outstanding people that are part of my care team here. I wish I could give something to each and every person that has been part of my journey! I've made some very sweet and likely life long connections with a handful but every single one will always have a special place in my heart and I won't forget them and all they do.
Now that I'm not attached to the drains or IVs I'm able to scoot around my room in a specialized wheelchair, which does wonders for my feeling of independence and confidence. I was able to organize some of my things and spend some time near the window watching the boats on the water.
Today was just a peaceful day and very much needed. Tomorrow it is back to the week day routine, which is more challenging and busy. Plus hopefully I'll have some answers about where we are in the appeal for my MELD score. And I'll get settled into my next digs, fingers crossed I get put into another room with a decent view.
Bless you all, have a wonderful evening and I'll update again when I can. More miracles coming our way, I just know it. Keep the faith!