Mommy needs a new heart

01/26/2024

Hi! If you could follow this link and vote for me for The Mended Hearts, Inc. Rock your scar campaign.

Please vote, like and share! You can vote once per day! ❤️‍🩹

Thanks!

The scars of resilience: A testament to the incredible journey of my heart and the skilled hands that have guided it. Complex d-TGA Heart Transplant 11/03/2022 at UCLA

01/20/2024

I’ve entered the rock your scar contest. Please vote for me! It ends January 31st!

Share this post so I get more votes.

Thank you!!

The scars of resilience: A testament to the incredible journey of my heart and the skilled hands that have guided it. Complex d-TGA Heart Transplant 11/03/2022 at UCLA

01/13/2024

Due to the huge success of our 2023 CHD Walk for Hope, the CHD Coalition granted $140,000 to advance three CHD research studies. This year, the institutions receiving the grants were Boston Children’s Hospital and Children's Hospital of Philadelphia.

To find out more about these programs:
https://chdcoalition.org/what-we-do/chd-research

01/13/2024

It was my sister birthday today and I was able to bake her favorite cake. It takes me a really long time to bake and do things in the kitchen because my hands shake so bad and it’s really hard for me to stir but I got it done!

12/22/2023

Stacy Need's a New Heart Pictures of Stacy and the girls My older sister… Carey Minnis and Catie Rudolf needs your support for Mommy needs a new heart!

12/19/2023

Latest update!

https://gofund.me/824b6fdf

https://venmo.com/u/StacyMinnis

https://cash.app/$life0fStacy

Stacy Need's a New Heart Pictures of Stacy and the girls My older sister… Carey Minnis and Catie Rudolf needs your support for Mommy needs a new heart!

12/10/2023

12/06/2023

Here is the Amazon list that a few people have asked me to post!

Christmas List - Amazon Gift List -

12/06/2023

Hi!
Sorry I haven’t updated in a while, we have had a lot going on. Lexi went to the UK in September to start her masters program. She is having a great time but she can’t wait to get home and see her cats, dogs, sister and her friends and family. She’s really excited to be able to watch her new little cousin!

I still can’t work even though I made it to the one year mark! The one year mark brings down the mortality rate exponentially. Year 2 is supposed to be easier and I am supposed to start to feel better.

I still fell terrible most of the time. I had my one year angiogram and I ended up with a huge hematoma in my groin. I’ve been in the hospital twice in the last month. Once because my kidneys were not doing great and they needed to monitor them and give me fluids and rest to see if that would help. It did help and my kidney function improved some. I was also in the hospital for the hematoma, it wouldn’t stop bleeding and it’s one of the most painful things u have ever gone through. I couldn’t walk or sit down. They did pain management and got the bleeding to stop. I am still recovering from that, I can walk a little better and I can sit on the potty and not be in excruciating pain. Due to the location of the hematoma I had to lay down with my leg straight or I was in an incredible amount of pain. It still hurts to sit up and walk but not near as bad as it was. It was one of the worst things I have ever gone through.

Without being able to work I don’t have money to buy the girls much for Christmas. They know they won’t be getting very much and they tell me it’s fine. Cortana said “well at least I have a mommy still!” It makes me feel bad that they won’t be getting much because they have both been through so much. If you would like to donate for Christmas, I would really appreciate it. It’s hard as a mom to not being able to really do anything for your kids.

Recovery has been much harder than I think anyone anticipated. I have drs appointments weekly still. The gas and parking to go to LA is so expensive. I hope year two I won’t be at the drs all the time. My cardiologist told me that my recovery has been more work than probably two full time jobs. Every time a medication is changed or a dose is decreased or increased I feel terrible for a few days to a few weeks and then it’s time for another adjustment. That dosages should be more stable this next year and I have been able to come off 2 medications, one gave me daily stomach aches and horrible cramping.

My back is still an issue. I go in the next week to get steroid injections to see if that helps. The back pain now makes my calf and foot burn. It’s nothing like sciatica and it’s due to the compression fractures and nerve damage. I would love to be able to be free from pain and not take any pain meds in year two.

I have not had any rejection which is great. I do not have the results from my angiogram but they did tell me the heart looks wonderful, my pressures are good and my ejection fraction is really good! The heart seems to be doing amazingly well, now my body has to learn how to live with it. When they put a new heart in, the rest of your body has to kinda get used to it. I had such a terrible heart for 42 years and that affected all of my major organs. So now they are struggling a little.

On my last CT scan my pancreas didn’t look great. So I have an appointment with a specialist in the next week also so they can determine if that’s new or if it’s been like that for a while because of my old heart.

People often don’t realize a heart transplant is not a cure, I traded one set of heart problems for another. This has been frustrating for me because I was used to my old heart and being tired often but it’s nothing close to the exhaustion I feel now and how most days I feel like I have a bad cold or flu with body aches and soreness and generally just feeling terrible. I’m excited to get to the good part where I will supposedly feel better than I have everything felt in my life.

Thanks for all the support I really appreciate it. The only way I make it through the end of the month with groceries, and all the bills is from all of your support. The girls and I appreciate all the love, prayers, well wishes and donations!

Happy Holidays with love,
Stacy, Lexi and Cortana

Venmo - StacyMinnis
https://venmo.com/u/StacyMinnis
Last four of phone number 9872

CashApp life0fstacy

https://gofund.me/824b6fdf

09/19/2023

Lexi leaves tomorrow for the UK!

Here is her amazin list. Her Visa was over $1,000.00 more than what the school had said. So she doesn’t have any money really left to buy the things she needs for her student housing.

It will all go directly to her student housing and security collects it.

Thank you!!!

Help Lexi at Uni! – Amazon Gift List –

09/13/2023

New update!

Stacy Need's a New Heart Pictures of Stacy and the girls My older sister… Carey Minnis and Catie Rudolf needs your support for Mommy needs a new heart!

06/29/2023

We are reaching out to you today with a heartfelt request to support Lexi, an extraordinary young woman who has overcome immense challenges in her life and is now embarking on a remarkable journey. Lexi is my daughter.

Lexi, who was in foster care during her early years, has been granted a life-changing opportunity to pursue her education in England. We are organizing this fundraiser to help her make this dream a reality.

Lexi's journey has been far from easy. After spending the first year of her life in a challenging environment, I was allowed to become her foster mom and bring her home to California. Her resilience and determination have been evident throughout her life, and six years ago, she faced another significant test of strength. Lexi's biological mother reached out to me, pleading for me to care for Lexi’s three-year-old sister. This came at a great cost, both financially and emotionally. I had to legally contest this adoption in two states, hire two separate legal teams, and temporarily relocate to Oregon to establish residency. Finally, after six long years, the adoption was legally finalized in May 2022 when Cortana was 9 years old.

As for my own backstory, I was born with a congenital heart disease (or defect) and never expected to see the third decade of life. Thanks to medical advancements and amazing clinical teams, my heart was instrumented multiple times while awaiting a heart transplant. In May 2022, right after legally adopting Cortana, the condition of my heart forced me to be admitted to UCLA with the only option of getting better, needing a heart transplant. After over 200 challenging days inpatient with a heart that continued to worsen, I finally received the long-awaited heart transplant. The transplant, for which I had waited 42 years, began a series of different obstacles, medications, and medical follow-throughs.

We are reaching out to you to support Lexi in her dream of achieving this life milestone.

Our goal is to raise enough funds for Lexi to travel to England and support her stay there for the year-long master's program in the UK. By creating a fund to support Lexi in her studies and living expenses, you can help make a tremendous difference in the life of this young woman.

Lexi will be pursuing a master's degree in special effects and prosthetics. During the year that I waited for my transplant, she obtained a cosmetology license to be able to volunteer in hospitals, providing haircuts to patients who are medically unable to go home for long periods.

As many of you know, only half of foster children graduate high school, and only about 1/5 go to college. Lexi’s story will not only support her and her future but also inspire other foster children to pursue their dreams.

We humbly request your support in making a donation to Lexi’s GoFundMe campaign. Every contribution, no matter how small the amount, will make a significant impact on her journey, both symbolically and physically, and support her personal mission to bring joy to those in need. Together, we can and will uplift Lexi and help her create her own brighter future. Thank you for your empathy, generosity, and time to read this.

We are reaching out to you today with a heartfelt request to support L… Stacy Minnis needs your support for Help Lexi, former foster child achieve her dream!

06/24/2023

Today I exercised for 40 mins straight!! I have never been able to exercise in my life! I would go to the gym and lift weights and take 500 breaks. At one point o decided to get skinny and would ride my bike and take tons of breaks. It took me forever. I lost a lot of weight mostly from starvation and I blew the baffle in my heart. I need surgery to repair it and stents put in.

Today I was on the treadmill and took zero breaks and didn’t even get short of breath. You can see the chart from before my heart TX (transplant), then when they put me on medication in the hospital to improve function and now today! Also I did a whole peloton stack, where I stacked my warm up, walk, cool down and then stretch. It was a total of 45 minutes!!

I’m just now getting to where I feel kinda normal. I don’t sleep at all. I sleep in the morning for a few hours. Last week they diagnosed me with PTSD and insomnia from medical trauma. They put me on lexapro and it gave me a migraine so bad I had to go to the ER. I had to stop it. It also made me really anxious and made the insomnia worse. So this week we will try something else.

I’m still finishing my class and getting things up and running for my new business. I’ll be doing social media marketing. It’s something I’ve always wanted to do and in college I took a lot of marketing classes and I’ve always done a lot of advertising for my companies and realtors and just people I know. I’ve mostly always done it for free but now I’ll be able to make money doing it. I really enjoy it so far but I still can’t work more than an hour or two a day. My main doctor said it will be a year at least from TX before I can work part time. So I still need financial help.

The last month I have made a lot of progress! I can’t believe I can do an exercise and actually do it and not have a massive headache after 2-3 minutes. I also jogged for 2-3 minutes. I have never ran or jogged in my life. I really don’t even know how. I finally feel like I may someday get my life back.

I’m attaching my GoFundMe and also my Venmo. If you would like to donate you can either way. Venmo doesn’t take a fee. I would like to try and take the girls to Disneyland this summer or possibly a road trip. Lexi leaves in September for the UK and Cortana is having a hard time and cries when she thinks about it. It would be good for them to do something normal before she goes because the last 3 years have been far from normal.

Please share our story and register to become an organ donor!

https://www.registerme.org

https://gofund.me/18c2072a

Venmo StacyMinnis
9872 last 4 of ☎️

Thank you for everything you all have done and continue to do for us. We appreciate all the prayers, shares and donations! 🫀

04/27/2023

I posted an update and there are pictures of my heart on it!

https://www.gofundme.com/f/mommyneedsanewheart

Please register to become an organ donor!
Organdonor.gov

More info
United Network for Organ Sharing

Stacy Need's a New Heart Pictures of Stacy and the girls My older sister… Carey Minnis and Catie Rudolf needs your support for Mommy needs a new heart!

04/19/2023

I published an update about n my GoFundMe.

Here is my GoFundMe
https://gofund.me/824b6fdf

My Venmo is
StacyMinnis and I’ll post a picture in the comments.

Register to become an organ donor.
Organdonor.gov

Here is a good article to read.
https://www.nytimes.com/2023/04/18/opinion/heart-transplant-donor.html?smid=tw-share

Organ transplantation is mired in stagnant science and antiquated, imprecise medicine that fails patients and organ donors.

03/23/2023

Thank you to all of you who have donated and shared my GoFundMe! I had my checkup today and I’m still doing fairly well as far as transplant goes. My doctor did say this is usually one full time job for a year and with everything I have going on it’s about as much work as 3 full time jobs but I have stayed out of the hospital. They have wanted to put me back in several times and I’ve asked that they figure something out. Cortana just can’t go through me being in the hospital. My white blood cell count has rose a little more. I’m always tired because the insomnia is so bad. It was a different tired that I was used to with my old heart. This is complete and utter exhaustion and then I can barely walk because my back is so bad. I have started PT but it makes it worse, they say it will eventually get better. Right now “no news, is good news!”. The medicine has become easier for me to organize and to take. I had an allergic reaction to one and have rashes and scabs on my face.

Thank you so much for all the help and please keep sharing my GoFundMe. Until I can work again I’ll just be praying I get by. Everyone says to get help, there really is no help in America. Food stamps is really the most help you can get...and yes those are helpful but it doesn’t pay the bills.

Your support is really appreciated. sorry if I don’t return calls and texts much but I don’t feel good and most of the text are generally the same thing and same questions and some days I can’t deal with one more person asking “Are you feeling better yet?” Or if I can go to lunch or dinner. I can’t go anywhere because of my white blood cell count. It’s been almost a year since I have gone anywhere.

One day I will be able to re-enter the world but I have to get my immune system up and not go back in for Cortana’s sake.

Here she is at the doctors with me today! Lexi is so busy with school, she helps when she’s home or if I need her to help. The yellow stuff is the nasty medicine that I was allergic to, it didn’t come in pill form. 🤮

Here is the link to my GoFundMe. Please keep sharing our story!

https://gofund.me/824b6fdf

03/21/2023

Latest update

Stacy Need's a New Heart Pictures of Stacy and the girls My older sister… Carey Minnis and Catie Rudolf needs your support for Mommy needs a new heart!

02/15/2023

Here is the latest. The injections I have to give myself are awful!

Stacy Need's a New Heart Pictures of Stacy and the girls My older sister… Carey Minnis and Catie Rudolf needs your support for Mommy needs a new heart!

02/07/2023

I have some mild rejection. Right now we are just going to watch it. I had my last iron infusion at the chemo lab today. I start cardiac rehab this week!

Cortana likes to help organize my pills every week. It takes about 45 mins to put them all into an organizer.

01/18/2023

I’m 10 weeks post op. I haven’t had any main problems besides food poisoning and my biopsies are really hard.

I am done with steriods and my energy tanked. Also it made my back and sternum hurt really bad. They act a little like pain pills and they give you energy. I still don’t sleep well. I sleep for an hour or 2 at a time.

The shaking is really bad when I try to do things. It’s really annoying. My legs are really wobbly so I still use a walker.

I can not work and won’t be able to for a while. I also don’t have any extra disability insurance because I never qualified for any because I’ve always had a preexisting condition.

The way Medical care is set up in the US is meant to bankrupt anyone with a serious life long illness.

Any money I had saved went to the adoption that cost over 300k. It was the best money ever spent but left nothing in the event I needed a transplant. I finished the adoption, Covid closed everything down including me working and I got sick all with in a 2 years.

We need to change our systems to help people who have on going complex medical illnesses. We can not get any type of disability insurance because we were born “sick”.

I’m sharing my GoFundMe again because I’m not sure how I will make it through this “recovery” process.

Thank you for all you have done! Please share to spread awareness. If we had more organ donors the wait won’t be so long and I would have been able to get back to my life and working sooner.

Sign up to be an organ donor!

I have Venmo also
StacyMinnis
9872

Stacy Need's a New Heart Pictures of Stacy and the girls My older sister… Carey Minnis and Catie Rudolf needs your support for Mommy needs a new heart!

12/27/2022

Thank you to everyone who helped out during Christmas. The girls had a great Christmas!

My sister was able to pick up my heart last Wednesday and I was able to give it to Lexi for Christmas. She was so excited to get it.

It came in a plastic jar and she had to take it out and transfer it to its permanent jar and add alcohol to preserve it.

I am still doing fairly well. I get really tired quickly and it’s hard for me to hold things because I shake a lot. I tried to bake and dropped all the flour, it went everywhere.

I hope everyone had a great Holiday!

Merry Christmas and Happy New Year!

Thanks to an organ donor, I was able to spend Christmas with my family. Register to become an Organ Donor!

12/13/2022

With everything going on, Christmas presents for the girls are looking a little sparse this year. They are SO grateful their mom is home, but it would be so lovely to have a grand Christmas this year so I put together a Christmas list on Amazon for Cortana (age 9) and Lexi (age 19) if you feel so inclined to send them something, we'd be so appreciative!

12/12/2022

I got to take a full shower tonight! I could finally wash my chest.

My sister still helps and washes my hair and I still use the shower chair. I haven’t had a full shower without anything attached to me or being careful I didn’t get incisions/lines wet in over 8 MONTHS!!!

Tomorrow is biopsy and clinic day. We have to leave the house by 4:45 am and won’t get home until 2-3pm. They wear me out and the biopsy is not done with any sedation. It’s really uncomfortable to go through.

Cortana has been baking! She can’t wait for me to be able to cook with her. Her and Lexi can’t wait until I can cook for them again!

12/04/2022

Today has been 1 month since I had my heart transplant.

They are still working on getting my meds adjusted. That will take a really long time, probably close to a year. Thankfully I haven’t really had any issues taking meds. Nothing really taste good and i don’t have much of an appetite.

Sleep is still an issue. They are tapering down my steroids. So hopefully that improves.

I can now go to the bathroom all by myself! My sister still has to give me showers.

I’ll start physical therapy and occupational therapy next week. And in the following weeks I’ll start cardiac rehab.

I am really really sore. My whole upper body is sore. My incision looks good and my scar doesn’t look much different than my old one.

All my labs and biopsies have come back good so far. My new heart is really strong. The doctors are always amazed by how strong it is and how well it’s pumping.

I am retaining a lot of fluid. It’s really uncomfortable. They increased my diuretics to see if that will help. I am losing some excess fluid because my weight goes down every morning but they said it will take a while for me to lose all the fluid I have built up in me. This is fairly normal for congenital and transplant patients.

Food is a huge issue. I’m scared to eat most things. One wrong thing and it could land me in the hospital for a long time or even kill me. This is something I’ll have to deal with for the rest of my life because I can’t fight off bacteria which can lead to infections.

I go to UCLA 1-2 times a week right now. I have to have a biopsy every week. They go in through a cut in my neck and into my heart and take a small piece to check for rejection. These make my neck really sore for a few days. The drive is also really hard on me. We leave the house around 4:45 am and don’t get home until around 2 pm. It’s a really long day for me. I don’t usually feel good for a day or 2 after.

Things will slowly get easier for me. I am able to get in and out of bed much easier now. I am more comfortable sitting up in bed. I am much more comfortable sleeping with the new pillows but I have to sleep basically sitting up or my chest hurts. It will be a while before I can lay down and sleep. But overall I’m much more comfortable.

The girls are doing good. Cortana is a great nurse and loves to take care of me. The last week was hard because she was sick and had to stay away, she can’t stand not being in my room with me. Thankfully I haven’t gotten sick. Lexi is a normal teenager and helps whenever I need anything. Cortana will ask her to take over when she goes on “break”. She takes this nursing stuff very seriously! Everyone is trying to be really good about wearing mask and washing their hands so I don’t get sick. They doctors have already said if I get sick they will put me in the hospital, and to be prepared for that.

Thank you for everything everyone is doing for us. We still have a really long road ahead. My sister tells me about everything everyone is doing. I still have all my alerts off and try to respond when I can. I get really sore if I type or talk too much. It hurts to talk sometimes and it is really uncomfortable/hurts to raise my voice at all. We couldn’t do this without all of you!

I’m sure today is a hard day for my donors family. Please keep them in your thoughts and prayers.

I am happy to be home but a little nervous at times. ♥️

11/22/2022

Update: Day 20 post transplant

Sorry I haven’t updated in a few days. I usually update when I finally lay down at night but I fell asleep straight away both nights.

Today she had clinic so we spent the morning at UCLA. She gained some weight so they immediately did an echocardiogram and the dr determined that it’s water weight so they’re upping her lasix and taking her off one of her anti-fungal/viral/bacteria meds (can’t remember the name right now) to see two things. One if it helps improve her kidney values because they’re a bit out of the range they want them to be at and two because they’re upping her lasix so there won’t be “extra” damage to the kidneys with both going at once, or something like that—we left the house at 5am sharp 😴 So for the next week low sodium diet and regulated fluid intake to see if this plan works to get and keep the water off.

She got her tension sutures removed today so that’s an extra annoyance gone and starting tomorrow we’re tapering her prednisone.

Every dr that sees her and her heart values just comments what a great heart she got and how well she’s doing. It happened again today. She has a really strong, good heart.

Cortana is off for the week so she’s not leaving her mom’s side. She jumps to her every whim and if she can’t do something then she comes and get my mom or I.

Tomorrow she’s planned a pizza 🍕 picnic with Stacy (thank you to those that sent the Dominoes gift cards). Cortana’s plan is to open my sisters door to the backyard and she’ll sit outside her door and my sister will be in her bedroom and they’ll have lunch together 🥰 She thinks of all kinds of creative things to do with her mommy.

Thank you to everyone that has sent stuff. We read the thank you notes and I “plan” to thank everyone personally but I haven’t. Just know that we’re so appreciative and everything has come in so handy! I’ve been updating the list as we receive things and add things we need (except gift cards—I leave those because we use them… A LOT!) and I plan to keep doing this as we go along…

I’ll keep you posted as things go on, but she doesn’t have another visit/biopsy until next Monday so there may not be much to share between now and then. We shall see!

11/19/2022

Update: Day 17 post transplant

She has ice!!!

Ice water tastes REALLY good to her since transplant so being able to have ice again is really somethin!

We’re getting into a groove over here and my sister seems to be getting more comfortable/moving easier every day. So far biopsy #2 is negative but they’re still waiting to get the stains read. So far so good. Her tacrolimius was a bit low on her latest blood test, so we have to up her dose a bit. Once we get confirmation about her biopsy we’ll likely lower the prednisone.

That’s all for today!

11/18/2022

Update: Day 16 post transplant

She had her 2nd biopsy.

She went to her 1st cardiac clinic.

She survived the car ride.

AND…

We got stuff! All kinds of stuff from her list! THANK YOU! We’re so blown away by the outpouring. Really. We’ve always been the family that did everything for everyone else. We’ve never asked for or accepted help—until we HAD to. Our village has shown up in so, so many ways you guys! And it feels so incredible to know that you’re out there and that you care! I’ve been removing items once we get them and adding items that we find out we need.

She still has tension sutures on her chest so we cleaned and re-bandaged them tonight. Meds are less scary today than yesterday; they may start tapering her prednisone tomorrow already.

She goes back on Monday, but so far so good. We’ll let you know when she gets the results of this 2nd biopsy. 🤞🏼🤞🏼🤞🏼 it’s still negative for rejection.

The walkie talkies have been AWESOME! They’re just what we needed and Cortana has one hanging around her neck at all times ready to jump at her mommy’s beckon call. She’s such a good helper and she just wants to be with her mommy all the time. She can’t wait until she gets to lay across her again. She’ll probably never let go once she’s allowed to!

Tonight she’s already trying to swindle sleeping on Stacy’s floor, but not gonna happen for a loooong while!

11/17/2022

Update: Day 15 post transplant

She has her 2nd heart biopsy in the morning. And her 1st clinic where she meeting with all her drs. Driving back and forth isn’t real fun or comfy so this will take some getting used to. 🚑

We’re working through all her meds. 💊 There’s a lot and it takes some getting used to in order to keep everything perfectly on schedule. I’m not as nervous doing it today as I was yesterday so that’s the good news.

We’re also charting her BP, temp and pulse 3 times a day and have to document it in a log for her to bring to clinic each week. Her team is watching her VERY closely and if anything is amiss we are to call UCLA immediately and they will direct us what to do. We have allllll kinds of emergency numbers and who to call for what should anything come up. It’s all in a 3-ring binder. 📁

When she goes to her appointments she has to bring her binder and all of her meds 👇🏼 with her!

She had her 1st home health visit today. That didn’t go so well—she’ll talk to her team at clinic tomorrow to figure out what to do about that. 🧑‍⚕️

She’s still trying to get comfy. She was looking forward ti her own bed but it’s been hard to get her comfy since she can’t lay flat because of her compression fractures in her back, but I think we’re making progress figuring out what works and what doesn’t. 🛌

We’ll see how her biopsy and clinic go tomorrow. Here’s a pic of her current meds.

11/16/2022

Update: Day 13 post transplant

She’s HOME.

Here’s the Amazon List

11/15/2022

Update: Day 12 post transplant

She got the results of her heart biopsy. There are no signs of rejection (so far)! It doesn’t mean there won’t be rejection, but this is very promising news!

Did you know after a heart transplant there’s no “fight or flight” response because the nerves have been damaged and the brain is no longer connected to the heart? The heart, after transplant, is just an organ that beats on its own… I didn’t. So many things to learn.

Did you also know that you get different medications to take based on where you live? 🤯 Like you need different anti-fungal or different anti-viral meds (generally more) if you live in the high desert than if you live in Orange County…!

We’re set for discharge tomorrow (as long as her take-home meds come in)… it was going to be around lunchtime but now it looks like it will be later in the afternoon.

Today our meeting lasted 4 hours. I think we met with 5 people; I lost count. And we haven’t even gotten to how to care for her wounds or her medication, so we’ll go over all that tomorrow before discharge.

For the next 3 months, ABSOLUTELY NO VISITORS, after those 3 months, her team will reevaluate where she’s at and may push that out to 6 months. It all depends on how much they’re able to teeter her meds down to. She can’t be around people until they can allow her immune system to come back. Which also means that food safety is top priority for, well the rest of her life, but exceptionally important during this time as well.

For now, we will wear masks in the house around her and be especially careful since it’s cold and flu season on top of covid being around. Any one of these things will land her back in the hospital.

There’s so much information to digest, but one thing she can’t have is fountain drinks. Not so much because of the drinks themselves but because of the ICE; most outside ice is made with tap water which she is no longer allowed to have. We have to get an ice maker so it can be cleaned easily and the ice can be made with filtered water.

I’m still working on the Amazon list. It’s been a long day and I just crawled into bed, so that’ll wait for another day. I’ll let you know how tomorrow goes.

One more sleep.