Amelia's Kidney Journey

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Category: Parent’s Blog

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School, September, October, and the August that lasted 15 minutes…

Hello again all! It seems like every time we blink another week has gone by. Then we keep saying “we need to update the blog” and all of a sudden it is another 2 weeks and another kidney clinic finished. I suppose that is good news though, Amelia isn’t having many problems to report. Since our last update…in July…There has not been too many things to report with regards to Amelia’s health.

She has been getting stronger and doing more, including some sewing. She made Halloween placemats for us. She has also been baking up a storm, learning new things and making Leatha a bit jealous.

School started in August and she has been doing online classes. At Parent Teacher conferences, all of her teachers gushed about how good she was doing. One teacher keeps giving Amelia days off from class because she is so far ahead of the other kids in the class! As of this writing, it is the last day of the semester and she is cruising along with all A’s to show for it.

We have finally gotten to monthly kidney clinic appointments! It is nice to only have to go once a month now, and Amelia doesn’t mind a monthly blood draw. We had to reschedule Octobers clinic because Amelia picked up a cold that is dragging her down. We know it is not COVID, she has had her 2 shots, but gets to have another because she is immuno-compromised.

Fall is upon us now, it has snowed and is getting colder, but It was nice this past sunday so we decided to take a family trip to the zoo. Amelia wasn’t feeling great so we dug out the wheelchair and headed out. We spent a lot of time at the elephants, remembering Grandma who passed a year ago. She loved the elephants.

The cold weather also took its toll on our garden, and we had to harvest all fo our tomatoes and squashes. And guess who was out there picking most of them…Amelia!

All in all we are doing well. Still looking for a house, but doing the best we can. With the infrequency of our updates we are wondering if this blog is still worthwhile. If you are reading this, please take a second and comment down below so that we know these updates are still of value. We are considering archiving this whole thing if it has run it’s course.

Thanks for reading, and keeping our family in your thoughts and prayers.

Still coming to you live 192 days into the new kidney,

-Justin

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October 20, 2021
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Activities

Is it really July already?!?

You know the time seems to slip away so fast… It is hard to believe July is almost over. It has been nice to only have Amelia on weekly blood draws and twice a week clinics. We have only been up there twice in the past month.

Amelia is getting better ll of the time. We have seen her go from being so tired and weak before the transplant to being up and going and wanting to get out and do things. She likes to go for drives and just get out. We are still careful with interactions because of her meds, but they are being reduced. She is off of all of her antibiotics, antivirals, and antifungals now. She is still on prednisone for a couple more months though.

They finally have her blood pressure under control, and it has been even and in a normal range for quite a while now. If this keeps up she will not have any blood pressure meds in the future! Along the other lines, the BK virus that is showing up in her labs is about the same as it was last week….that is good, that means she is fighting it to some extent. We want to avoid it throwing her off again and having to go on chemotherapy again. She has had enough fun for a while.

It is nice to not have to be so worried about Amelia right now. She is doing so well. She is becoming the pastry chef in the house. she keeps trying new recipies and finding things on the internet to cook. She bakes with Leatha sometimes and it is funny, Leatha gets relegated to sous chef and Amelia takes over. It s fun to see her personality coming out like that. She is a strong girl and it is showing in how she is taking on life

We are about a month out from starting school and Amelia is a bit worried about 9th grade now being High School. She is banking on them still having distance learning this year….As of now, they do, and hopefully for her, it won’t change. Otherwise, she is heading to Taylorsville High itself. Until we move at least.

We are still working on buying a house, but it hasn’t gotten much better in the market. We just keep trying and count our blessings that we have a place to stay. As soon as we can though, we will have our own house.

Well, that is the latest from the Matthews. Thank you again for following us and keeping us in your prayers. Our cup truly is overflowing with blessings through all of this year. We do appreciate it.

More to come as we know it.

Still coming to you live, 101 days into the new kidney,

-Justin

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July 21, 2021
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Activities

The heat doesn’t change much…

Hello folks. Hot enough for you? I have decided that it doesn’t change much of the turbulence in the life of the Matthews. It has been almost 3 weeks since we have updated things on here, that is too long. We keep trying to get Amelia to post something, but we are still struggling. Maybe we can blame the heat for that.

Over the last few weeks, Amelia’s kidney has started to level out. it has gone from over-working to working like it should and it has now kicked in to help regulate her blood pressure. It regulates very well, and as of now, she is only on 1 blood pressure medication. We had some worries as this was happening though. She got really low on her blood pressure and almost passed out more than once. But the doctors have a handle on it now, and they are keeping Amelia in the right range with only the one medication. She has been on so many meds for blood pressure over the years, I am sure that the rest of her body is trying to figure out what is going on.

She is very excited that her clinic appointments are every other week now. She is looking forward to getting back to quarterly appointments. They still have to draw blood 2 times a week, just to keep tabs on her. That will go to once a week and then every other, and then once a month in the future as her transplant ages and she gets more balanced. I am looking forward to only loading her medicine box with her anti-rejection stuff and a vitamin or two. That will be so much easier. I am sitting here looking at a picture from when we brought Tristan home from the hospital and we got all of the kids together on the couch. Amelia was 4 and 1 year out from her first transplant. And just out of the hospital herself, but that is another story. I was thinking back to giving her medications then. She couldn’t swallow pills yet so we had everything in elixir form for her to drink. The pills are definitely easier.

We are also watching a virus called BK. That has reared its ugly head before and resulted in PTLD and a few rounds of chemotherapy. Last week the virus was on the low end of positive, but this week it is up slightly. They are adjusting her immuno-compromising medications to try and let Amelia combat this virus, so it doesn’t get into her kidney. Don’t google this, just trust me, the doctors are concerned and watching it closely so it doesn’t get to the PTLD again. Your prayers are appreciated.

Otherwise Amelia is feeling better and getting outside and doing things. She was a big help moving stuff out of one storage area to another even though it was the hottest day of the year. She has been walking a lot, and we even got her fishing again on Father’s day. She didn’t think she wanted to fish, but by the end of the trip, she was telling me that her pole was too old and her reel was broken so she needed a new one. Easy fix, I work in a sporting goods store. Then she decided that she was going to fish enough to need a license. She hasn’t had one of those for years. I told her that we had to go fishing enough to justify the cost (I really don’t care about the cost, but that is an excuse to get out and fish more…) and she agreed! That is miles and miles better than the past few years where she would just want to go for the drive and then just sit and watch. Next up will be fly fishing….or maybe ice fishing….

As for the rest of us, we are settling into our temporary house pretty well. Everyone is learning that minimalism isn’t so bad and we can get by. But then we realize that all of my camping gear is stored in the storage unit. In the back of the storage unit. and I don’t want to unload it all in the heat. So we are making do, and it is working. We are still looking for a house, but the market is still screwy. We tried to look at 4 houses last week, and our real estate agent came back and said that one was already sold, 2 didn’t take FHA loans, and the last only wanted cash offers in a hurry. Yea, thanks for that. So we are still looking. We have some great friends that are keeping an ear out for anyone who is looking to get their home for sale and maybe we can get in on that before it hits the open market. That may be the only way we get into a house right now. We will see.

Overall, we are doing well. It is so nice to have Amelia getting better that it isn’t even funny. I don’t have a ton of stuff to report, and that is a good thing. I firmly believe that our family is going in the direction that the good Lord wants us to go in. Even with all of the chaos and things happening, I see too many little things that happen just the right way or just at the right time to be coincidence. I know that there are more prayers than mine contributing to the things that we are doing. I want to thank each of you again for sending those prayers and well wishes, they are effective and answered in a very real way. I am a big believer in group and directed faith, it most definitely does work miracles. I only hope that I am able to pay it forward in sufficient quantity. Thank you again.

Well, that’s all for today. There will be more to come as we know it.

Still coming to you live, 75 days into the new kidney,

-Justin

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June 25, 2021
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feelings

Life stumbles on through the challenges.

Hello all. Since my last post just over a week ago, we have had some major changes. We have finished moving from our old house of 7 years and into a new place that is a major blessing, all thanks to some good friends that we met working with the Scouts over the past few years. It is not the best situation, but it will let is be together and keep our feet under us until we can find a new house. We had to pause for a bit on the house search but now we can hit it hard again.

Through the move, Amelia has continued to improve. She is stronger and has more energy, and when we ask her how she is doing, she has gone from the “Ehhh” answer to “Ok.” That is really huge for her, she has been “Ehhh” for quite a while now. It is really good to see her wanting to get up and move around instead of not feeling like doing anything but pet the cats. She still gets tired easily, but is getting so much better.

At the last kidney clinic they were able to reduce her medicines a bit more as her new kidney is finding its rhythm, but there is still a fine balancing act. Her blood pressure medicine that she has been taking is getting too strong for her now that the kidney is taking over that job, so that has been reduced, but there have been several days where her blood pressure has been very low, almost to the point of passing out. A call to the doctor and a further reduction of her meds has helped a bit, but we are waiting to see. Her body likes to respond slowly to changes.

She is still getting her labs drawn twice a week and she is not really happy about that, but it will change soon. We are excited to watch her get better and be able to get back to the “normal” Amelia that she was before her kidney started to go downhill.

For those that want to know, yes, she still has the original transplant. It is still marginally working and not causing her issues so they are going to avoid another major surgery for now. They are watching it closely though, and time will tell.

I do want to thank everyone again for reading this blog. It is cathartic to write and it is nice to know that it is seen and that people really do care. I also want to thank everyone who has donated to the GoFundMe. The outpouring of love and compassion from that really blows me away. I never knew that so many people cared so much. We are eternally grateful for the support, and humbled by your generosity. Thank you all.

More to come as we know it.

Still coming to you live, 56 days into the new kidney,

-Justin

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June 6, 2021
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feelings

Yea, it’s kind of like that.

Hello folks! Do you all remember when last march felt like it lasted for a year or two? Well this May is not following suit. It has been a long month for us, but it is flowing through our hands like water through a sieve. We are almost at Memorial Day. May is almost over, and we are almost moved out of our house of 7 years. Under protest. But that is another story. Here we are chronicling Amelia and Her Kidney.

Amelia continues to improve every day. Her incision is healed nicely, and she is balancing out her levels more and more. She is still nauseated and dowsn’t eat very well, she says everything tastes funny. She is however, gaining weight and the dietician is as happy as she ever is. The doctors are happy too, her blood pressure is evening out and they are reducing her other medications on schedule.

We have graduated from the 2 times a week clinic to once a week, but she does still have to have labs drawn twice a week. She is looking forward to when those are decreased, she is tired of getting poked!

While we all have been moving the house Amelia has been doing as much as she can to help while still not straining herself too much. She is getting stronger and stronger and does not get as worn out as she has in the past few months. That is so good. I am glad that she is able to do more and more and does not look as sick. Another couple of months, and people will not even know she had a transplant.

Thank you again for keeping up with Amelia and her story. Thank you for caring enough to come back and find out what is happening next, and thank you to all of you who have donated to the GoFundMe….we are truly humbled by the generosity and love that we are being shown.

More to more to come as we know it, still coming to you live 47 days into this new kidney,

-Justin

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May 28, 2021
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Activities

On Amelia’s 12th Birthday…1 week before her 15th.

Hello all. It has been a couple of weeks since we had an update so here it is. Today is Amelia’s 12th birthday- the birthday when she got her first kidney transplant. It is hard to believe that 12 years has gone by since then, and now a month has gone by since her new kidney birthday.

She is doing pretty good with all of the changes in the past month. Her body is figuring out what to do with the new kidney and the kidney is figuring out her body. Her labs are hanging out mostly in good ranges and she has more energy than she has had in a long time. She does get tired easily, but she is always up for a drive.

With being a month out of transplant, she no longer has to go to 2 clinic appointments per week. She is up to just one a week on Tuesday. She is happy about that, but not very happy that she still needs to have labs twice a week. That will change as she gets farther out of transplant.

All in all, things are going well. We are very happy that her new kidney is working so well and helping her feel so much better.

Thanks again for reading this, there will be a new post from Amelia herself sometime this week!

Still coming to you live, 29 days into the new kidney, and 4380 days into the first one,

-Justin

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May 12, 2021
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Activities

The first Sunday home…

Hello! Thank you for comng back and reading more about Amelia. This has been an eventful week. It has been now 5 days since we brought Amelia home and she is rcovering. She is still hurting and the medicines that they keep playing with are not allowing her to feel great, but she is out and at least active enough to be going up and down the stairs and riding in the van.

She is still super immunocompromised, so any visits will still have to be over the interwebs, and that will last for another 3 weeks or so. We have to take her to clinic 2 times a week, for those next 3 weeks just to keep track of her.

We have been staying home for the most part except for some trips out looking for houses. Timing came up and we are going to be moving to a bigger place that will allow Amelia some more space to heal and move forward. We have been starting to pack boxes and get things into storage, and Amelia feels bad about not being able to help as much as she wants to. She really wants to help, but she is still under a lifting restriction from the surgery. She can’t even lift the cats! It’s a good thing that they like to jump on her and get petted.

So things here are chaotic, but not bad. Amelia is doing her best to heal and get back into the swing of things. She has been puzzling with Brenda like crazy, and it won’t be long before she has every puzzle in our house done! She did 6 puzzles in the hospital during that week!

We are all thankful for her recovery and how well she is doing. We know that all of your prayers have helped, and that the hand of the Lord is guiding her. Thank you yet again to all of you.

More will come as we know it.

Still coming to you live, 12 days into the new kidney,

-Justin

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April 26, 2021
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Activities

3…2…1…Touchdown!

Hello folks. Well it is Wednesday the 21st and Amelia is at home! She was released from the hospital last night and got to see her cats and sleep in her own bed. The doctors think she is doing ok for now, so she just has to rest, drink a lot and avoid people. Should be easy for her, she likes the cats better I think.

As for the future, She will be going up to the kidney clinic twice a week for the next month just so they can keep a close eye on her and monitor how her new kidney is doing,

She is on a bunch of new medications that are going to be tapered off over the next 3 months, but look how many that she was able to stop taking! There are supplements and blood pressure meds that she doesn’t need anymore. There is even one I forgot to get in this picture.

For now, all is going well. Amelia is trying to feel good, and get back to feeling normal. She will be there soon, and we will be cheering her on all of the way.

Thank you again for being here and wishing her well.

Still coming to you live, 8 days into the new kidney,

-Justin

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April 21, 2021
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Activities

The Countdown to Home

Hello everyone. We are here on Monday just counting down the hours to when Amelia can *hopefully* come home. Her medications and the new kidney are playing havoc with her body; all of those electrolytes and other minerals are still trying to figure out why they don’t need to be so high anymore. That and she needs to drink 3.5 liters (116 oz, not quite a gallon) of water every day so they don’t have to do any more IV’s. Or an NG tube. She doesn’t want a tube in her nose.

Other than being a bit lightheaded and dizzy from the immunocompromising meds she is feeling better today. Her appetite is coming back and she ate actual food and not just the snacks that she has been subsisting on.

We had our education with the pharmacist (over zoom) about all of the meds that Amelia will be taking. There are not many more than she has been on and those will be reducing over the next couple of months, so we will be good.

Amelia also got to go to the playroom today and do some crafts. They are only letting one person at a time in there, so she was good and isolated. She did the dreamcatcher below and some fun “dump painting” art.

Amelia’s Unicorn Dream Catcher!

Now is the part where I get to dash some hopes and dreams. Many of you didn’t know Amelia back when she had her first transplant, and some may have forgotten, but when she comes home she will be extra immunocompromised. They are keeping her immunity very low so that she doesn’t attack this new kidney. Over the next 3 months they will back off on the suppression medication and she will only be as immunocompromised as she was before. During these next few months though, we will be living in a sanitized bubble. Much like all of us have been doing this past year anyway. We won’t be able to have any visitors over to the house for a while and we will not be going out and doing much where there are people around. Amelia will still be available over Skype! That is a good thing that has come from the pandemic as I have said before. She can talk to anyone on the phone and over Skype or Zoom.

Yet again I want to thank everyone who is watching out for us, and keeping up with Amelia. She is doing really well considering major surgery less than a week ago, and I am convinced that all of your prayers and well wishes help with that. Thank you again.

More to come as we know it, and hopefully home tomorrow,

Still coming to you live 6 days into the new kidney,

-Justin

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April 19, 2021
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feelings

Time marches on and improvements are made!

Well folks, Saturday was a busy one for all of us. We started out going to Tristan’s Pinewood Derby with the Cub Scouts! He was so excited about it. I was grateful that I could carve out the time to make his car with him and get it ready to race. It took a bit over the week, but we got it done and we raced!

It was fun for Leatha, Cameron and Grandma Kelly as well. One blessing we have got from the COVID stuff over the year is the ease of technology. Leatha was able to get on Skype from the Pinewood Derby, to Brenda and Amelia up at the hospital. They got to talk to all of us, and see Tristans car race as well as a bunch of the other silly cars there. It was great that they could be there and share the experience while still being in the hospital.

Amelia did pretty good yesterday at the start. They continue to watch her blood pressures and labs and try to keep them in the proper ranges. It is a bit of a challenge, the new kidney has it’s own ideas apparently. She is up and down on some things and it may be a few weeks before it is all completely figured out.

She did get out of the room for a while and go for a ride over to the clinic side, which was closed. She still has to avoid a lot of people because she is much more immunocompromised than she was before.

It is nice to be able to go over there because it is all closed on the weekends. She took another trip on Saturday night over there and we only saw 2 other people…one of them being her doctor! That is where the nephrologists offices are.

Amelia has had a good time talking to the kids over Skype and the phone, and arguing over cats with Leatha. Some of the things related to the transplant, and the surgery itself are hitting her hard, and she is a bit overwhelmed at times with all of the doctors, tubes, and people congratulating her for her kidney. She is usually a very private kid and would rather have all of this attention just go away for a while. But we will get through it, She will get through it.

Amelia is one of the strongest people I have ever met. She spent yesterday with her pain growing but not wanting to bother the nurses too much. She hides a lot from the outside world so they don’t worry so much about her. She has had friends in school that didn’t ever know she had her first transplant. She is a trooper and just wants to be normal.

She was in fairly good spirits earlier last night, even to the point of arguing over the cats with Leatha. It was a funny conversation over pretty much a non-issue.

Later Saturday was a bit more exciting. He blood pressure decided to crash a bit and she felt terrible. They figured that, even though she drank a bunch yesterday, her new kidney was pumping it off too fast and making her somewhat dehydrated. She needed fluid via IV. That helped her blood pressure and heart rate. Her labs this morning showed more ups and downs, so she has some diet adjustments to try and get more magnesium and potassium.

Right now, she is finally down to one IV tube. She has had quite a few over the past few days. Down to one now. ONE! She was able to get up and actually get dressed in more than a hospital gown for the first time since Tuesday.

She is looking forward to going home for sure. What is needed for that? I’m glad you asked. The answer is, it depends. It depends on her blood pressure being stable, her being able to go the bathroom consistently on her own, and some of her other labs. She gets to have labs twice a week for the next month, as well as twice weekly clinic visits. They keep really good track of new transplant patients. We did the same thing12 years ago with her first transplant, but she doesn’t remember any of that. We are hoping that she will be able to go home tomorrow, but it could easily be Tuesday, it all depends on wht her body decides to do. Hopefully all will go well tonight and into tomorrow morning.

Thanks again to you all, there will be more to come as we know it.

Still coming to you live, 5 days into the new kidney,

-Justin

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April 18, 2021
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