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,
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,
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,
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,
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,
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,
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,
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,
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.
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,
