08/13/2018  Hi All, Another update on Jade. Jade is still in the hospital. Her body is having a tough time adjusting to the feeding tube. The goal is for her to gain weight but unfortunately she has lost 3 more kg since Friday. We will be hearing from the GI team today about what the next steps are. It looks like we will probably be going home with the tube and trying to get her to gain weight which will take a while. The good news is that once she is released she will be allowed back on the transplant list even with the feeding tube in.

08/14/2018 Hi Everyone, 
I just wanted to post another update. This morning we discovered that her feeding tube is now clogged and they can no longer use it so they need to replace it. Because of how traumatic it was for her last time they decided to do it in an OR under sedation this time rather than her having to be awake for it. This will be happening tomorrow. Please keep Jade in your thoughts and prayers.

08/15/2018 : Today Jade had a new feeding tube placed. She is feeling a bit better and was playing Hospital Bingo.

08/17/2018  Paint your own ceramics day!  Jade’s amazing spirit shines through in her smile as she gets to paint her own ceramics, even tho she just learned that she is not able to go home this weekend yet.

 

08/18/2018  Hi All, I wanted to give an update on where we are today with Jade. Yesterday we thought we were on track to go home this weekend but we had a little setback when she started vomiting again. Our goal right now is to gain weight but with her different conditions it’s just a matter of getting the correct magic formula to get her to a place where she doesn’t constantly throw up, and doesn’t have stomach pains or nausea. Yesterday they had tried letting her drink and they think that this is was set us back so right now she is not allowed to eat or drink anything and can only get her fluids and nourishment from the tube feeds. We also had to decrease the rate that the tube feeds are running at because the speed was making her sick to her stomach. We are hoping at this point that a 24 hour slower feed and her not taking anything orally will do the trick. As soon as we find that magic formula we can go home to try to start gaining the weight back.

08/20/2018  At the hospital today, Jade said she loved this quote! She is so brave! Tomorrow she’ll be having a surgical procedure for her lock jaw and they’ll also reinsert the feeding tube under sedation (it came out today)! Please keep her in your thoughts and prayers!

 

 

08/21/2018  Waiting for surgery. Going to get the lock jaw issue checked off the list today! She said her outfit makes her look like a purple marshmallow!

 

Surgery update. Jade is back in her room recovering from her jaw surgery. The docs said it went very well and she should not have the issues with her mouth getting stuck open anymore. So glad to take that off our plate. They also got her feeding tube back in and will start feeds again tonight. Feels like we are taking some steps forward to getting home

Surgery update. Jade is back in her room recovering from her jaw surgery. The docs said it went very well and she should not have the issues with her mouth getting stuck open anymore. So glad to take that off our plate. They also got her feeding tube back in and will start feeds again tonight. Feels like we are taking some steps forward to getting home. Thank you for all the prayers and well wishes!

08/23/2018  Jade is coming home today. Her jaw needs to heal and she will be on the feeding tube for an undetermined amount of time but for now she’s happy to get to her own bed.

08/25/2018 Enjoying being outside for the first time since the hospital stay!

08/31/2018  Back at Randall’s. The feeding tube is clogged again and will need to be replaced. They had to put in a new tube, this time they had to do it in endoscopy so she’s recovering right now and we’re waiting for her to come to the room they set up for her. The plan is to go home tonight but right now it’s up in the air. We misse the Car Wash event for COTA in honor of Jade but have a little video of it.   —-  >  Car Wash Fun

09/01/2018 Hi all. I usually avoid posting pictures of the bad side of Jade’s journey but I thought I should share this with you. Jade had a hard day. We spent all day in the ER because her feeding tube got clogged and needed to be replaced two days in a row. The feed on the new tube caused a lot of pain and she could not get comfortable. She’s finally found a position to fall asleep. Hopefully her body will adjust overnight so we can go home. No matter how nice the nurses are, she really doesn’t want to be here.

09/02/2018  Jade’s feeling better today. We’re waiting to get an x-ray to see if she can be dismissed. Unfortunately the GI doc doesn’t seem to be too confident that this tube won’t clog too and she said if it cloggs again we’ll talk about a surgical tube in her belly.

09/05/2018  The feeding tube clogged again. Now we’re waiting to find out if we need to go back to the ER or if they are going to put us right in a room.

09/06/2018  Hi All,
I wanted to give you another update since we were left in a bit of an unknown state yesterday. We received a call from the GI today who said that since Jade tolerated the NG tube overnight we are just going to leave her on that for now. This might be easier to manage and if she doesn’t start throwing up again this might be the best solution. So at this point we are just going to wait to see what happens. So far so good. Jade is up and about today helping the boys build their new desks.

09/20/2018 We haven’t posted as much lately because right now we are trying to get back into a normal rhythm so I wanted to send a quick update. Since our last trip to the ER on September 5th the tube has only clogged once and we were able to use the Coca Cola trick to unclog it. School has started and we are getting into a routine now. Jade is still not gaining weight and therefore not ready to eat normally. Because of all the issues we’ve had she’s decided to cancel her Make-A-Wish trip to ComicCon in New York but we will plan something else for after she gets her kidney transplant. She got some exciting news this week! Her Dad is coming to visit for the weekend! Lots of pictures to come from that! 

09/28/2018 Third trip to the ER this week. This girl is still smiling. 

10/04/2018 A little update on Jade today. A few weeks ago they switched her NJ tube to an NG tube. The difference is that the NG goes into the stomach and is much easier to switch out when it gets clogged. They had hoped that this would work long enough to get her to gain some weight to alleviate the SMA Syndrome. Unfortunately they have not been able to get enough calories in her and she has not gained any weight. In order for them to get more calories in they tried to have to have her increase the feed rate but when we tried that she started throwing up again which defeats the purpose. This morning we talked about doing a surgical option but it seems like that might not be much better and they really want to avoid surgery so we are going to give it another go with the NJ tube (the NJ does into the jejunum which is part of the intestines past the SMA). We are hoping that since the nephrologist has approved her to have some more fluid, that the NJ tube will not clog and allow her to gain some weight without us having to go a surgical route.

10/18/2018 After much consideration we have decided to go with the GTube surgery. The tube is thicker and shorter and apparently has a smaller chance of clogging. Praying that this is the solution to get some forward movement.

10/20/2018 Guess who is ready to go home!! Waiting for one more dose of pain meds and discharge stuff to happen and we are out of here! The only thing we’ll miss is the nurses ????. One thing we learned while we were here is that Dilaudid makes Jade sing!

11/25/2018 Lots to be grateful for!! Jade had a G-tube placed back in October which has been way better than the NJ tubes! It goes directly into her stomach and is a bigger tube so she has not clogged since she left the hospital to get the tube placed in late October. She has gained 3 pounds so far! She still has a ways to go – but so far, things seem to be on the upward slide!

12/12/2018 Good news!  It has been a while since we have updated all of you on Jade’s current health status. Since Jade’s surgery, getting the G-Tube, she has been gaining some weight and recently started eating dry toast and handfuls of Cheerios. That is huge progress!!! 🙂 She has had some problems with pain around the stoma (opening where the tube goes in) but it’s been getting better. Recently she has had some pain in her back and joints. Her Rheumatologist thinks it comes from lack of activity (dialysis three times a week and being tired from being sick will do that to you), so Jade will need to start physical therapy to get into shape a bit. Jade is still not back on the transplant list, however with her starting to eat in little bits we hope that she will be able to get back on that list soon. Thanks to all of you for the support you have given us with donations to COTA and volunteering your time. It really means the world to us to see all the support Jade has.

01/07/2019 This past week has been very exciting in the world of our Jade. She’s getting to try all kinds of foods. She’s been doing very well and today is the day she’s been waiting for…eggs! She’s so excited!

01/17/2019 Great news update: over the last few weeks Jade has been slowly working up to eating a semi regular diet. As of two days ago she is completely off the Tube Feeds. She is still on a kidney safe diet which is pretty restricted on it’s own but being able to eat food is so exciting at this point that we couldn’t be happier!! Today we were told that she could go back on the transplant list in early March.

02/11/2019  Hi Everyone, We got some exciting news today and as I was thinking about how I would share this with everyone I started thinking about what we have gone through. I came to realize it has been almost two years since Jades original diagnosis. I decided to recap the last couple of years before sharing the announcement.

May 2017 – Diagnosed kidney disease caused by Lupus (SLE)

June 2017 – Started Chemotherapy for Lupus and 3 times a week infusion therapy to attempt to get kidneys functioning

August 2017 – Infusion therapy did not work to get kidneys back to functioning on their own so dialysis was started three days a week

August 2017- June 2018 Continuous dialysis, adjusting of medications and diet, dialysis went up to 4 days a week but after fine tuning of meds and diet was able to go back down to three days, started talking about transplant options

July 2018 – Added to transplant waiting list August 2018 – Developed SMA due to rapid weight loss, was taken off transplant list

September 2018 – December 2018 – Went from eating food to feeding tube only, went through several types of feeding tubes, decided to get surgery for g-tube, after g-tube weight gain started

January 2019 – Started slowly adding regular foods back to diet

February 2019 – g-tube changed to button, back to regular (still kidney safe) diet And now for the news:

February 12th 2019 – BACK ON TRANSPLANT LIST!!!!!  In closing I want to say thank you again to everyone who is continuously supporting Jade and our family. Words cannot express how grateful we are.