Amelia's Kidney Journey

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Category: Parent’s Blog

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A New Amelia Emerges!

Hello yet again folks. It is now Friday and Amelia is doing really well. She has been up in the bed as well as up and walking. She is getting restless just sitting around. Last night, she got to go for a ride in the wheelchair! She went over the bridge and to the clinic building to look out over the valley with all of the rain and snow.

She was glad to get out of the room for a few minutes. We talked with the doctors this morning, and they are pleased with her progress. Her new kidney is working well and functioning like they hoped it would. We are very excited for her.

What now? Well this weekend we are in the hospital. She will continue to work on keeping her pain under control, drinking a lot, and keeping her blood pressure down. They are really looking to get her out of here the first part of next week, quite possibly Monday.

This is such a great blessing for Amelia and our family. We continue to be grateful to all of you out there who are praying for us and thinking of us. It all really helps, it really does.

Thanks again

More to come as we know know it, live 3 days into the new kidney,

-Justin

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April 16, 2021
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feelings

Corners are being turned

Helo again! ?Well it is now Thursday and Amelia is making great strides. Yesterday was a big day for her. She steadily decreased her IV medications and by the end of the day she only had her pain medicine and IV fluids. She was feeling like moving a bit and sat up in the bed, but decided that wasn’t enough and stood up for a couple of minutes.

Time passed and she decided that sitting up wasn’t a bad thing and spent over an hour in the chair watching TV. That wore her out, but was very good. She even decided to go for a walk down the hall last night.

They have been working on her blood pressure too. She was really high, then the meds kicked in, then she got low (normal for most of us) and then has crept up again. They are struggling to find the right balance of medication to get her blood pressures in the normal (for her) range.

With all of the IV’s being stopped, they are switching her to oral pain meds this morning as well. That will make it easier for her overall. It will also be better for her pain control and will allow her to get out of the ICU. They are planning on her leaving the ICU and going to the floor this afternoon.

She is doing really well, she looks better and is feeling a bit more like herself. Her labs are going in the right direction and her 2 main kidney labs are now lower than they have been for a couple of years. That is really good.

That is what we know for now. When is she going to go home? NOt sure at this point, it will depend on her blood pressure and other labs. Personally, I don’t see it happening before Monday at the earliest, but stranger things have happened, and it could be over weekend, or into the latter parts of next week. It would take a crystal ball, the position of the stars, and possibly a sacrifice to know for sure at this point. Since I am not prepared to do any of that, we will see.

**In the midst of witing this post, we actually moved out of the ICU!. She is on the transplant floor and currently getting a shower. Things are going well.

Still coming to you live, 2 days into the new kidney,

-Justin

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April 15, 2021
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feelings

The morning after…the kidney begins

Well folks it is now Wednesday the 14th! Happy Birthday to Brenda!

0910 Amelia did ok overnight with all of her 97 tubes and the pain of the surgery. She slept a bit here and there but is still tired this morning. She is hurting quite a bit, but they have her on some good pain medicines and are taking care of her well.

With her labs early this morning it is interesting. The few that have been going up an up with her kidney failing, are actually going down today. Her new kidney seems to be working already and that is fantastic!

We are sitting here now still in the ICU waiting for the doctors to come and tell us how much longer she will be here and when she can go up to the floor.

0920- well the nephrologist is here now with the pharmacist….

well, she is on the right path. They are going to work on getting her IV meds stable and consistent and get off of some of her blood pressure meds, and on to other ones. That is what is keeping her in the ICU for now. She has been drinking water all night so that is good. She will be able to eat in a little while and then start to get up and move around. They have to get the pain under control and help control her nausea.

It is coming, but slow. The surgeons and more doctors will be here in a little bit to discuss further. More to come as we know it.

Coming to you tired but live, 1 day into the new kidney,

-Justin

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April 14, 2021
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feelings

Greetings from the ICU

Hello again. We are now in the ICU with Amelia. She is very groggy and sleeping with all of her pain meds. She is however doing really good. Her kidney is working and things are getting into the correct ranges. Her blood pressure is a concern, but they are keeping that where it needs to be with medications.

We have seen almost everyone on the transplant team that we have been working with in kidney clinic for years, and they are all excited that Amelia got a transplant. The dietician and the pharmacist are keeping really good tabs on her as are the doctors. They all seem to have a bond with Amelia because we have been seeing them for the past 14 years!

We will be here for the night and we will see what happens tomorrow as far as leaving the ICU. She will be in the hospital for a while, but not in the ICU for all of it.

I continually am impressed by the nurses and doctors up here. The have a genuine concern to heal these kids and to take care of them. It is nice to know that Amelia is in such good hands.

More to come as it comes to us,

Coming to you live, a few hours more into the new Kidney,

-Justin

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April 13, 2021
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feelings

Let the new kidney reign!

Well folks, as I sit here, 3 1/2 hours have passed and we just talked to the surgeon. He said Amelia is out of surgery and doing well. He said that she got a really good kidney that woke right up and started making urine so he thinks it will do really well for her. We have to wait for her to get out of recovery and get set in the ICU before we can see her. They say about an hour, or 45 minutes as of this writing. The surgeon thinks she may be out of the ICU tomorrow and home in a week.

This is such a relief for her to be out of surgery and doing well. It is also great to be looking forward to her getting better and being our normal Amelia again.

Thanks again to everyone for their thoughts and prayers, I know they helped.

More to come as we know it,

Newly into the New Kidney,

-JUstin

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April 13, 2021
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feelings

Holy Kidney’s!

Hello folks. Well after 300 days on this new journey, the time has finally come. Amelia has a new kidney.

That’s right, a kidney was found, and as of this writing it is being put in Amelia.

Here’s what I know so far: We got a call last night that a kidney was available that didn’t have any matching problems and was a really close match to Amelia. They were doing the final blood tests and stuff last night and then they called and said it was a go. we ended up coming to Primary’s late so that they could get Amelia’s covid test and some other labs done and keep her NPO for the surgery.

Everything was on track for this morning and they wheeled her down for the surgery at 1030, and she went into the operating room at 11:10. As of now, we are still waiting and hoping.

For the big questions: No, we do not know the donor, or anything about the donor. We most likely will not. That is ok. All we know is that the donor was a darn good match for Amelia, and we are very thankful for the selfless act of donation.

Next, Amelia will be keeping her old kidney as well as this new transplant. Amelia will have 2 kidneys for the first time in 14 years. Her first kidney was on the right side, near the front of her body. The new kidney will be in the left side and near her back more.

We don’t know for sure how long we will be in the hospital, but the basic idea is this: Surgery is 3-4 hours. Amelia will then go to the ICU for 24 to 48 hours so that they can monitor her for blood pressure and make sure she is recovering from the anesthesia ok. After the ICU, she will be up on the transplant unit on isolation. She will be there for 3-4 days, all depending on how she is recovering. We are looking at 7-10 days overall for this stay.

This is all so much to process, but such a wonderful thing. Amelia got emotional as she was going back to the OR as she finally got all of this stuff at once. This is such a blessing for Amelia and the rest of us. She will be feeling somuch better, and willbe able to go and do things without getting so worn out. We are very grateful to the donor, as well as allof you who are reading this; your prayers and good thoughts have carried us through the past few months that has led us up to this point. Thank you all.

Still coming to you live 299 days into the new kidney journey, and 0 days into the new kidney,

-Justin

*****More will be coming this afternoon******

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April 13, 2021
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Activities

In with April…

Well, April has arrived and time marches on, as does the wait for the kidney. Amelia has been hanging in pretty well with all of these challenges she is having. At least she is not in pain like she has been in the past. I don’t like seeing her like this, when her normal is “ehhhh”. I keep telling her to change her scale and make that “ehhhh” into “fine” so we know when she is going down. She is still trying to do things normally, but she is struggling.

We went to a couple of Easter egg hunts this year. The first one Amelia made it all the way across the soccer complex to her area and got a few eggs in the chaos. We then went to Riverton where they had an interesting way to do Easter. Around the whole park they had stations where the kids could do activities and get eggs and a punch on a card. They went around the park, got all of the punches, and got entered into a drawing for 1000 eggs. I gvuess we didn’t win, but they had fun. Amelia rode the whole way around the park in her wheelchair and did as many of the activities that she could. Cameron was great pushing her around and doing a bunch of the activites while he was pushing her in the chair.

After that we went fishing. She didn’t do a whole lot, but she had a good time getting outside and seeing some actual sunlight. She still got worn out. She did have another session at kidney clinic this week. She is just hanging in there for now. She is not ready for dialysis as of now, so that is good news. We also found out that she will be able to avoid having to get a fistula if dialysis is needed. That helps her get ready for dialysis. We just hope that we can get her a kidney before she needs to go on dialysis.

On that note, I am finally getting the next round of tests done to see about donating a kidney for Amelia. It has been a very slow process for sure, but I am hoping that it will speed up at this point. We will see what the tests hold after tomorrow.

Thanks for sticking with us and continuing to keep up with Amelia.

Still coming to you live, 294 days into this new kidney journey,

-Justin

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April 8, 2021
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feelings

Beware the Ides of March

Oh how time flies when there is chaos abounding! It has been a while since our last update. Amelia has been hanging in there but she has not been feeling great. She is nauseated most of the time and just feels crummy. Since our last posts, she has decided that food tastes bland, cats are about better than anything else, and he blood pressure is an arbitrary number that she doesn’t like very much.

We had a kidney clinic 2 weeks ago where things seemed to be going ok. Her labs were in a decent range and she wasn’t swollen up so they decided that she didn’t need dialysis yet. They also changed her blood pressure medicine to better regulate her pressures because they were getting high. That new medicine gave her grief and terrible headaches for about a week. She started taking her blood pressures more often and they were all high, like really high, and she was on 3 different medications to lower them. That earned her another kidney clinic today and an EKG to check her heart.

The good news is her heart seems to be ok, but her kidney is not. The doctor is estimating that her kidney function is about 12% now; down from about 20 or so back 6 months ago. That is most likely why she is feeling crummy and just not feeling great at all. She is starting another 24 hour blood pressure monitor test tonight or tomorrow to see how her average is. I think that this is her 3rd one. I just did mine for the donation people, and it wasn’t much fun. We went fishing for part of the day and it was not always easy to fish when I had to stop every 20 minutes to have a blood pressure taken. Brenda and Amelia had a ton of laughs watching me just stop and stay still, right after I cast out into the river. I didn’t even try to fly fish, I don’t think that would have worked very well at all.

Amelia has been really tired lately, even going for drives where she sits in the car wears her out. We got her a new wheelchair so that we can still go places and she can do things with us without wearing her out so bad. It is hard to watch her get down so far. i don’t like seeing her getting so sick again, but she endures it well. She is still one of the strongest people that I know. She has endured so much in 14 1/2 years, and she is not done yet.

They started talking to her more about dialysis and the fact that she will need it to at least feel better in the near future. I guess it will be me and Amelia, dialysis buddies again. That last dialysis was almost 12 years ago now…

On Thursday, we will be up at Primary’s again so that they can do an ultrasound on the veins in her neck to see if they can place a dialysis catheter near there again. Amelia would rather have the temporary catheter than the fistula in her arm, and we let her choose. I hope that she can do the catheter, it will be easier on her and not permanent.

I am still in the long, drawn out, painstakingly slow process of getting worked up to donate her a kidney. I have passed the first two steps, and the actual blood tests and things are pending in the near future, like later this week or early next week. I am hopeful that we can get all of this through and done, and I can match her enough to keep her off of dialysis and get her feeling better. We will just have to see how that goes.

Well, we just keep on keeping on at this point. We will be updating more often on here because more things are starting to happen. Thanks for continuing to read about Amelia and sending her all of the prayers and good thoughts, it does help.

Still coming to you live, 279 days into the new kidney journey,

-Justin

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March 23, 2021
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feelings

Exiting January, kicking and screaming.

January has been, interesting to say the least. We have been watching Amelia get sicker and sicker over the past few weeks. She has lost much of her appetite for anything that doesn’t include copious amounts of garlic, because that is a strong flavor that she can actually taste with all of her medicine. We made garlic fries ala Seattle Mariners and she ate a whole bunch!

She has been more lethargic and gets worn out easily. Even her beloved drives seem to wear her out more than they should. It is disheartening to watch her go down like that. When her disease first hit, it was rather quick and then took a long time to get to to normal. This go around, she has gone downhill from normal rather quickly. It is hard to see for us as parents.

We still have hope though. When the time is right, she will get her transplant. These trials willhave a purpose in the future, and we will all be stronger when we get through it.

Thanks again for all of your continued prayers and well wishes.

Still coming to you live, 219 days into this new kidney journey,

Justin

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January 28, 2021
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feelings

Stumbling into the new year

I wrote the last post about how fast things have been going, but then, don’t you know, it has been over a month since we have written. The Christmas season was a lightning blur, even with so many activities cancelled or postponed due to the raging COVID monster. We didn’t get to go to the festival of trees this year, but we did get to watch it on the computer. A bit different, but still cool that they could have the fundraiser still.

Well, we had Christmas and everything went really well. Amelia had some hiccups with her medicines and the timing of them. We had switched one of her meds from the afternoon to the morning trying to get a good reading on the labs. The problem showed up pretty quickly. This medicine makes her shaky and not feel very good. She wasn’t able to eat much, and was nauseated along with the shaking during the day. She was getting miserable, so we switched her med back to the afternoon. With that she is doing much better, having those symptoms during the night when she is sleeping, more or less.

She is able to eat better and is feeling better. I ask her every day how she is, and she usually says, “Crummy.” I told her that she should call that her normal and let us know if she is worse or feeling better. I only keep praying that she will be feeling better soon.

We had a fun New Year’s Eve, celebrating with homeade sushi and seafood, that Amelia actually ate. We call that a win.

She has been doing good with school, but is glad that this semester is over. She is looking forward to getting started on some new classes. We also found out that Amelia will be in one of the first classes of 9th graders to attend high school. She will be going to her 9th grade year at Taylorsville High School. She was both excited and nervous about that when she went to the orientation. Lucky for her, Leatha and Cameron have been going there for a few years and the school itself isn’t so intimidating.

Earlier this week, we had another kidney clinic, and wonder of wonders, it was virtual. I didn’t get to attend, but it went faster than ever before. We did find out that her labs are doing better in some respects, but worse in others. He kidney function is definitely going down though. We keep hoping that a new kidney will be coming soon to take care of that.

Again I would like to thank everyone who reads this blog and keeps Amelia in their thoughts and prayers. I am a big believer in the power of group faith and prayer. It is the reason that we still have Amelia with us, and the reason that she has done so well over these past 11 1/2 years of her transplant. Thank you to all of you.

I was also remembering back to that virtual Festival of Trees at the first of December, and a couple of things that Alex Boye said in his final remarks that have stayed with me all season. He said that he had looked up contagious in the dictionary and saw that it meant the transmission of something from one person to another. While we all have the COVID beast in mind, he also said that there are things in this world that are even more contagious; Love, Peace, Harmony, Joy and Good Tiding of Good Will. He was talking about the feelings of Christmas, but those are exactly the things that Jesus Christ embodies, and what I hope we can all spread around this country.

This weekend we had our stake conference. During the Saturday night session, they had a slideshow of some of the things that our stake did for others during the pandemic. From yard cleanup, to the harvest festival, to the coat drive, to the bike drive, these were all things making the community better. I find that seeing that kind of service and love in the face of this pandemic inspirational.

Carrying on and taking care of others, and just living with odds and circumstances against you forces you to find another way to look at things, and brings hope. Hope is always there if we can find it. I hope to be able to always find that hope.

Alex Boye also said that he mother used to tell him to always find the gift in every struggle, find the peace and good. We try to do that with all of the trials that we have and especially with Amelia. I know there is a far reaching reason for Amelia to have this kidney failure.

I don’t know what it is yet, but it will enlighten someone in the future. For myself and Brenda, I feel that our trial with Amelia is not only teaching us things, but through all of this, we will be able to help someone else understand what their child is going through, and help them. I don’t know when that is going to happen, but I hope that our experience will support and help them to find the gift in the struggle.

Thanks again for reading this.

Still coming to you live, now 208 days into this new kidney journey,

-Justin

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January 17, 2021
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