Audrey Johns Support Team!
Donation protected
Audrey needs our help and all the support in the world right now!She’s one of the brightest lights in so many of our lives. At only 15 she has the ability to light up the darkest of days with her genuine smile, infectious laugher and kind heart. Facing an unknown and very serious illness Audrey is currently fighting for her life. She is stable at this point (7/22) however has a very long road of recovery ahead of her, in which she will need the support and presence of her family and friends.
On July 13 she was taken into the hospital with symptoms of what the family thought was the flu but quickly turned into something much much worse. The family has no solid diagnosis of what is causing the underlying issues, However the doctors at Randall Children’s Hospital are working endlessly to try and figure this out. Audrey’s parents Michelle and Ken have stayed by Audrey’s aside from day one and have been given a very long timeline for recovery. As the family’s providers they will need our help in order to continue to be by her side. Please give what you can -whether that’s monetary, a prayer, helping with food, helping with the other children in the home, or simply writing a support card for Audrey. Please help her light continue to shine and let’s be a beacon in this time of great darkness for this family.
I will be posting updates as much as possible through this account: (they have been taken from Michelle’s and kens pages)
7/16 9:30 PM updates belowAudrey is the one that has has to do everything. Today it's an EKG in the ER. Weird symptoms and tachycardia, so the dr sent us to the ER for rehydration (as the easiest most fixable thing on the list of possibilities)
Update 7/14 8am:
She had 3 bags of saline at SW, all sorts of blood drawn. They thought at one point that she might have a blood clot, hence the CT scan. That came back clear for the blood clot, but showed that she has pneumonia in both lungs. We were transferred to Randall's Childrens Hospital in Portland.Saw a dr about 12:30am and she told us she was waiting for the xrays to get more info on the pneumonia, and tested her for strep, as her throat was VERY red. We don't have the results from that yet, but its early in the day still.She is on oxygen and will be here for 2-3 days, until she can keep her o2 levels in the 90s without help. She is being given 2 different antibiotics (and some probiotics too) because of the possible type of pneumonia. She has had another bag of saline, and how much more will depend on how well she starts eating and drinking.
Update 7/15 9am:
Audrey isn't doing better yet. They said that the pneumonia is slow reacting to meds. She got a new xray this morning, has had a few breathing treatments overnight. The xray shows a bit worse than the one Friday. She is on a different oxygen intake now. They are hoping today is improvement day, or she will have to be moved to peds icu. Send all the get well wishes you can, please! :)
Update 7/16 3:30 pm:
Audrey was moved to picu yesterday about 5:30. She was very pale and wasn't getting better. They did an ipv treatment (it is a percussive breathing treatment) and very shortly after, our whole night changed. The dr decided that she needed to have a breathing tube and a blood transfusion due to her color and her hemoglobin numbers. When they started the sedation and she got laid down, she started spewing blood. They got the tube in and took 100cc of blood from her lungs and 130cc of blood from her stomach.
She had a hard time getting used to the tube, but seems ok with it now. They had to put an iv into an artery because the nurses didnt think they would be able to get all of the blood that the drs were needing for the tests they were running (45!). She is communicating with head nods, signing (such an invaluable tool, I'm telling you!!), and some writing.So, they dont know why, at this point. Could be that her lungs reacted badly to a virus/bacteria and started bleeding. Could be a rare disease, which they pulled two samples from her lungs this morning to verify/rule out.
7/16 9:30pm update:
After this morning's adventures, our day smoothed out. Audrey is stable. Still talking to us with asl and the dry erase board.The tests from the artery line and the samples from her lungs will take 2-3 days to get back. They started her on some strong steroids, as it is one of the treatments for one of the possible reasons for everything. They have been able to slightly reduce the amount of oxygen that they have needed to put through the ventilator. That being said, she is likely to be on the ventilator for a week and possibly more.So, at this point, it's a waiting game. And while I know the pictures attached are of a happy looking Audrey, she wouldn't want pictures of her now, posted online.Audrey needs all the prayers in the world right now. Please just send them out to her!
Update 7.17.18:
Audrey's condition worsened early this morning, to the point of putting her on an ecmo machine. If you don't know, this machine takes the blood out of Audrey, cycles it through the machine, oxygenating it, and returning it back to her body, bypassing her lungs. This gives her lungs time to heal. One of the most concerning things is that they cannot use blood thinners due to the bleeding in her lungs. This adds to the possibility of a blood clot. Thank you all for your thoughts, well wishes, and prayers, they are appreciated. Please know that I have read them all!
7.18 Audrey update:
Audrey had a great and uneventful night last night! She is stable. They have lowered the muscle relaxers so that she can move. This allow her to be able to talk to us again with ASL. Her eyes have ointment in the to help keep them from becoming too dry, so using the dry erase board is on hold for now, so, when mom is too slow at reading the finger spelling, she has started drawing the letters on our palms so we can figure it out. Lol. Try it, it's not as easy as you think it is!!We dont have any certain answers yet, but are slowly ruling out things, and narrowing the search parameters. Right now, she is considered immunocompromised, so visitors should check before coming down, if you are sick, are in a house with people that are sick, or are around you children often, we ask that you don't come visit. Those that do visit, please know that we are limiting the amount of time you will be here.
Thank you all so much for everything! The well wishes, food, cards, rides, ubereats and everything has been so greatly appreciated!! My sister has set up a meal train, if you are local and would like to help. She posted the link to it on my page, so you can go and sign up if you would like.
Audrey update 7.19:
We had another uneventful night! She was taken off some meds, put on others. To give you an idea, she started the 7pm nurse shift with 9 meds going into her iv (and had already been taken off 3 or 4 during the 7am shift.) She also has 3 meds going in through her feeding tube.We are still searching for answers. Some things have been eliminated, some things just pose even more questions instead of removing them.We are happy for an uneventful night, however, we still have a long ways to go. We are looking at 2 more weeks (or more?) On the ECMO machine. Then still more time to recover from the breating tube, and so forth.
Audrey is worried about her friends. She wrote a note to her friends to contact her, however, she hasn't been able to focus on her phone. So, friends, don't think she is ignoring you!
Audrey update 7/20:
So, Ken seems to be so much better at writing these big long updates. But, that's ok. We have no significant changes at this point. She did well overnight, with no additional need for pain meds. (she is on a constant drip, with the ability to have more input into her iv) Today there were more tests done, a new xray (done daily to measure changes), a bath, and had her tubing rearranged so that she is able to be somewhat seated in her bed. She will appreciate that!We were informed that we are looking at about 6 weeks before getting off the ECMO machine. Then you have the general healing time with physical and occupational therapy. This is not going to be a short haul.All that being said, she is in a good spot right now. While she isn't 'significantly' better, she is not worse. And that is the least that we can ask for!!
I know that we have said this already, but thank you so much for your positive thoughts for Audrey, whether they be prayers, good thoughts, positive wishes, or whatnot, anything positive to help her become healthy is welcomed. Honestly, we don't have the brainpower to be able to respond to every message, though, we do read them.
Audrey update 7.22:
Today Audrey's breathing tube was swapped out for a new one that is slightly bigger. This will help her to not breathe around the tube, and be larger to get the gunk out of her lungs.
She slept a lot today, as they used many drugs to make the swap happen. She is in some pain this evening because of it, so we are trying to keep on top of it.
Multiple times today, Audrey has tried to get out of bed. While this sounds good, with her still on the vent and on the ECMO machine, this is not good!
Today has been a decent day, we are all about decent days!
My sister has set up a meal train, if you would like to help with meals. I will add the link here, probably tomorrow, or you can find it on my page.
Amy has set up a go fund me account to help with bills and such so that we can be here with Audrey. I will add the link for that as well. (Also findable on my page)
Thank you everyone for everything! It is so very appreciated!
Audrey update 7.23:
I know it's a bit late, but I remembered as my head hit the pillow, and it just wasn't happening.
Audrey, for the most part, had a good day. Sat up, had some good ECMO tests, had some OT for her arms, and slept a lot.
Still no answers for everything, but hoping for more answers soon. Even if we dont get them, as long as she is on the road to recovery, we are happy.
Audrey Update 7.24:
Audrey has had a good day today. We are lowering some of her sedation, getting her to sitting a bit more each day. She is interacting more and more each day.
It is fantastic to see her personality showing up again! (Even if it is the moody 15yo Audrey that is showing up!) We didn't get an Audrey smile today, but we did get some of her sassiness and some of her 'don't touch me' mood. (which, can't really blame the girl, people are touching her all day long!)
Today she was taken off Heparin, and that will be one more step for the better! We are down to only 3 meds via IV! All systems are staying strong or improving!
Every step forward is a great step!
Audrey update 7:25:
Today was a good day. We have had quite a few chit chats, had physical therapy stop by, and had Audrey reach her "touch" limit. She is done with people touching her. Can't say as I blame her!!
We have taken some big strides, but want to make sure we are going to stay headed the right direction before we celebrate.
Audrey Update 7/26:
Audrey has made some great strides the last couple of days. Yesterday she was taken off ECMO! We didn't share yesterday, as we wanted to make sure that she was stable for a day. Today she had a kidney biopsy to try to get some more answers, and we won't know the results until mid next week.
She is making great eye contact with us, mouthing words, signing some. We are slowly weaning off meds, and settings on the vent machine, so that she can get off of that soon.
These time frames are different than what we had originally, different from what they were just at the beginning of this week, and far better than any numbers we had heard as of yet! We are so proud of our warrior princess! She has fought so hard to get back to healthy!
Thank you to everyone that has helped with prayers, good thoughts, meals, support, cards, donations, and anything else I may have missed.
The donations received with this will go towards many things, any medical needs that Audrey has, including post release counseling, the volume of follow-up care that's going to be involved as the overall infection in her lungs has so far been beating back the underlying diagnosis that allowed that infection to take control of her lungs is still undiagnosed and will include months of follow-up appointments and testing, and replacing the income that I have lost with being at the hospital with her this whole time. You can find the link to that here: https://www.gofundme.com/5uoj220
Kelly has set up a meal train for us. The food that we have gotten already has been delicious, and so very generous! She will be adding days, as we will be here longer than what is there. If you would like to make a meal, but can't get it delivered, you can let Kelly or Amy know, and they will make sure that it gets to us. You can find the sign up for that here: https://takethemameal.com/TDTZ7528
Thank you again, everyone, for everything!
Audrey Update 7/27:
Today has been a bit of a roller coaster. We had a bronchoscopy this afternoon that showed there was still some bleeding in Audrey's lungs. (not as much as before, but not as well healed as everyone had hoped for) Samples were collected and sent off for review.
We received some information back today from the biopsy, and we believe that we have the beginning of the understanding of the underlying issue(s). We are still days away from having a firm "this is what it is" type of diagnosis. But for the first time, we have a hint of what might actually be happening, and what we can do for Audrey to help her get truly better.
We are unsure of how long we will still be at the hospital, we know that it will be at least 2 weeks in PICU.
I want to thank all of the people that have brought us dinners and lunches, and coffees. Kelly, Cindy, Jason, Farley (Amy), Colleen, Autumn, Genevieve, Bridgette, Jessica, and Ruth. (I will be asking about recipes at a later date for some of the deliciousness that has been graced upon us!)
Thank you to Angelique for being the go gettum gal in getting Kami and Evan to the hospital most every day. Thanks to Kody & Dillon for visiting and driving as well.
Thank you to everyone that has donated on the Gofundme page (and those that have donated in person). Every bit of that helps us to help Audrey.
Thank you to those that have sent gift cards, they are perfect, and will be put to good use!
Many have sent cards for Audrey, we are reading them to her, and they are so sweet! Some have sent photos and drawings, those have gone up on the wall as well. They are all so sweet and heartwarming! Thank you so very much!
If you would like to help with a meal or the gofundme, I am putting the links below. You can contact Kelly or Farley if you cannot deliver the meal.
Meal: https://www.TakeThemAMeal.com/TDTZ7528
Gofundme: https://www.gofundme.com/5uoj220
Audrey Update 7/28:
This is going out a bit late, because we made it an early night last night.
Audrey got some new meds to see if they would help her lung bleed, and get us on the path in the right direction. She also got another unit of blood. We are slowly weaning her off of her pain meds, based on how much pain she is or isn't in during the day.
Her PT and OT stopped by, and she got to spend some time with them being stretched, and also got a lot of sitting up straight time.
With her lungs still being weak and healing, those few activities took a lot of energy from her, so she slept a good part of the day.
She had some visitors yesterday, and was able to interact a bit more, and we even got a couple of goofy grins from her. It was great to see Audrey coming back to us.
She is getting stronger every day, and is such a little fighter!
Audrey Update 7/29:
Today was a good day for Audrey. We are weaning off more of the pain/sedation meds. We did some PT and some OT including the hand bicycle. We did a whole lot of sleeping and trying new laying positions to help clear the lungs.
At the shift change, one of the night nurses came in that Audrey has had in the past, and actually had Audrey giggling. I would say it was the best sound ever, but it's still silent, so I will have to go with it was the best sight ever.
We are slowly allowing more visitors, however, please keep in mind that she is highly susceptible to catching bugs. So we ask that you not try to see her if you are sick, or have been around sick people. Please do NOT just show up hoping that you will be able to come in and see her. It is likely that you will be turned away. Audrey's health is more important than anyone else's hurt feelings for not being able to visit with her.
She is still fighting the good fight, and we are all so proud of her!
Audrey Update 7/30:
Today was half good, half not. Audrey started off the day EARLY, and was super chatty with her night nurse, full of smiles and sass!
Her PT and OT went great this morning, and she was sitting up off the back of the bed.
She had a couple of friends visit, and I do think that was the highlight of her day. :)
The not so great side is she did throw up a few times today. No one likes to do that, so it made her feel a bit extra crummy. We believe it was a side effect of some of the meds that she is on, and not an actual sickness. We are watching closely to make sure!
I know she misses her friends, and hopefully soon she can have more visit. She just doesn't have the energy for many visitors just yet.
Thank you to everyone for all of your well wishes and prayers, they are greatly appreciated! And thank you to my fantastic hubby, who is out working so that I can be here with Audrey.
Audrey update 7/31:
Today was very much the same as yesterday. Good for parts, a little bit pukey for other parts.
We had some ventilator settings lowered again today, and will keep doing that to get her closer to being off of the vent! That is exciting for everyone!
Audrey is loving her visits from friends and family, though they do tire her considerably. Today she read through every single card we have gotten, even the ones that were on the wall already. She smiled at all of them. Thank you to everyone that has sent a card. They really did brighten her day.
I know it is a short update today, and in many ways, that is a very good thing! It means we aren't going backwards!
Thanks to everyone for all of the things. :) Food, thoughts, prayers, gifts, donations, etc. They area ll very much appreciated.
Audrey update 8.1:
Today has been a great day! So many accomplishments!
First thing this morning, we got the breathing tube out! Audrey was a rock star (as always) and didn't need any extra oxygen after she got the tube out! She then saw the speech therapist to check to see if she could eat. She got to have the apple juice that she has been asking for, for more than a week, apple sauce, a bagel with cream cheese, and scooby snacks also with cream cheese. She was able to eat all of them with no issues! This means that she is allowed to eat soft foods, for now, until she builds up her muscles a bit more.
She was also weaned completely from one of her pain meds, and tonight will be the scale down of another. I am sure she will do well with that.
As to a diagnosis. We have a working diagnosis, there are still missing answers, but those are answers that we will likely never get. While we don't like it, it is the nature of the beast.
Audrey has been diagnosed with an auto-immune disease, called Paci-Immune GN. I will give some information here, but please know, we do have more information, and are working with the doctors in regards to this. There are two categories that one falls into with Paci-Immune GN, it is either GPA or MPA. GPA is the more common occurrence, and it is diagnosed in 7-10 people per million. (so, rare) MPA is diagnosed in 1-2 people per million. (so, even more rare) Audrey falls into the MPA diagnosis. This is a genetic condition, we do not know why it chose now to show up.
The Paci-Immune GN caused her immune system to do a couple of things. 1. allow another infection, PJP, to infect her lungs. 2. her immune system attacked her lungs. These two reasons are why she was bleeding in her lungs.
Yes, she will have an ongoing treatment for at least a year, but likely longer than that. No, we don't know what that looks like just yet, as we have been focused on her healing in the 'right now'. We have a great team of doctors working with us and her to figure out the diagnosis and how to continue her care from this point on.
I know Audrey is looking forward to being out of the hospital and returning to a normal life. We just don't know what the new normal is going to look like. Maybe it will be the same as before, just with daily meds? Maybe it will be drastically different? We don't know at this point.
Thank you to every one of you that have helped in any and every way. It really is appreciated. The meals have been fantastic (even if we forget to say something), the prayers and positive thoughts have helped tremendously, and the donations make it possible for me to be by her side. Thank you, again!
Audrey Update 8/2:
Today we continued to make progress! More step downs on the pain meds, more awake time, and more doing the normal every day things.
We sat up with no back support, we dangled our legs off the edge of the bed, and we even stood and moved to a chair today! These are all great steps! All of these things are easy for us, but when you haven't done any of these things for 3 weeks, it becomes a serious workout!
We had some bagel, some mashed potatoes with gravy, and a full bottle of Poweraide. Audrey met all of her goals for the day!
We are so proud of her! She has shown us how strong she is, and it is amazing!
Audrey Update 8.3:
Today we left PICU! Audrey has been getting better each day, and so they moved us to a "regular floor"!
She had PT this morning and got to ride around in a wheel chair. What a treat!
We are still working in eating and strength, and stamina, and they will come in time!
No other big updates from us today, we think those are pretty big though!
Thank you everyone for your comments, prayers, positive thoughts, hugs, meals, donations, and anything else I forgot to mention!
Audrey Update 8/4:
We have had yet another great day! It was Kami's birthday (yaaay!) So we did all the things!
First we had Pet Therapy
Then we had breakfast
Next up, NG tube OUT!
Then onto PT, and a trip to the first floor garden
Then onto OT and a real shower
Next up, lunch!
Then out to the 3rd floor garden to have cupcakes and ice cream with Kami and some family
Some rest time
Then off to deliver the extra cupcakes to the nurses on this floor and up in PICU too.
Then we had some dinner
Now waiting for bedtime.
It was a busy day with so many wheel chair rides! Stamina is getting better with each hour. She is excited to be getting better, and happily looking forward to going home. (no, we don't have a date or a plan for that just yet)
Mini Audrey Update 8/5:
Audrey's white blood cell count is very very low. If you planned on coming to visit, we ask that you not be sick at all. No sniffles, coughs, fevers, etc. She currently doesn't have the ability to fight off anything.
While we know that everyone wants to visit, we ask that her health take priority over visiting wants.
Make sure to check in with me or dad before coming up, so that we don't overwhelm her with visitors.
Thanks again, everyone! Please let me know if you have any questions!
Audrey Update 8/6:
Update 8/6:
Sorry for the no update yesterday, I forgot!
Audrey has had a great last couple of days! We have had PT every day, and she has grown her strength by leaps and bounds! Yesterday we walked a short length of the hallway a few times. Today we walked the entire length of the hallway!
We got to do some arts and crafts today, and she got a few more colored pencils and another coloring book. She got to pick out a new costume, it's a Mickey Mouse onsie!
Yesterday she was released to full regular meals (no restrictions!) and ate a whole red robin chicken burger AND all of the fries (except one)!!
Today we had breakfast in the garden, it was perfect weather for it!
We have had a few friends and family visit in the last few days, and it has been great! Tonight was sibling dinner night, so mom and dad were kicked out for a few hours. I'm told it was a good night.
We are waiting for the PT rehab doctors to come evaluate her to determine her ongoing care. (doing in patient or out patient rehab)
We are still working with zero white blood cells, so anyone that wants to visit needs to be absolutely well.
Thank you everyone that has sent cards. We have them all put up in the room, and she has read everyone of them. All of the nurses that come in love to see them as well!
Thank you also to those that have donated their time and resources for dinners (and lunches and breakfasts), and those that have donated to the gofundme, paypal, cash, or gift cards. They have been greatly appreciated and so very helpful!
Thank you again, all so much!
Audrey Update 8/7:
Today has been a pretty fantastic day!
We started the day with Pet Therapy. Bear was a big guy, and drooly! But any day with a pet is a good day!
Then we moved onto Doctors visits to find out what is happening with meds and will continue to happen.
Physical Therapy meant speeding up the walking pace, and even a few stairs!
Dinner field trip to the Heartbeat Cafe with Evan and Angelique for some yummy burgers.
No IV being hooked up means that the costume can be tried on. She really likes it! Thanks to the Chelsea Hicks Foundation for the costume and fun things!
Audrey Update 8/8:
Today has been a pretty quiet day. OT visited and gave her some strength building tasks and had a few visitors.
More meds being weaned from the rotation, blood tests still showing fewer white blood cells than we want to see.
We got more cards for the card wall, and have gotten them all put up.
Thank you everyone for your cards, well wishes in all forms, donations of food and money. They are all very much appreciated!!
Audrey update 8/9:
Today has been a good day. We walked down to the lobby and got hot chocolates to go with our breakfast muffins from Amanda, then had some more pet therapy.
We did lots of walking today to work on stamina. She is getting stronger each day! We went and searched out the Rhume office, and found this outside of the elevators. It's made up entirely of Legos!
Thank you everyone for everything you have done for us so far!
Audrey Update 8/10:
Today we got some good news, Audrey's white blood cell count has started going up! Yaaaay!! We still have to be careful around others, but it is headed in the right direction!
(as a side note, for future reference, if you plan on hanging around Audrey this fall/winter, you WILL need to have a flu shot. So, yes, this family that has never gotten one, will ALL be getting flu shots from now on, and forever. And you will too, if you want to spend time with her)
We had PT again today, and did a total of 15 steps! Which is a great improvement from the other day!
We are walking more and more each day to build the stamina up. It will be a long time before we are back to normal . . . but every day it is better!
Thank you everyone for all of your support, it has meant so much to all of us!
Audrey Update 8.11:
We have the greatest news!
Audrey came home today!!
We are so happy! Trying to get our new normal set up at home, so we ask for no visitors for a couple of days.
To explain a little bit about the goodbyes. In the lobby they have hello in a ton of languages. It was only appropriate to say goodbye in a few.
Thank you all so much for everything!
On July 13 she was taken into the hospital with symptoms of what the family thought was the flu but quickly turned into something much much worse. The family has no solid diagnosis of what is causing the underlying issues, However the doctors at Randall Children’s Hospital are working endlessly to try and figure this out. Audrey’s parents Michelle and Ken have stayed by Audrey’s aside from day one and have been given a very long timeline for recovery. As the family’s providers they will need our help in order to continue to be by her side. Please give what you can -whether that’s monetary, a prayer, helping with food, helping with the other children in the home, or simply writing a support card for Audrey. Please help her light continue to shine and let’s be a beacon in this time of great darkness for this family.
I will be posting updates as much as possible through this account: (they have been taken from Michelle’s and kens pages)
7/16 9:30 PM updates belowAudrey is the one that has has to do everything. Today it's an EKG in the ER. Weird symptoms and tachycardia, so the dr sent us to the ER for rehydration (as the easiest most fixable thing on the list of possibilities)
Update 7/14 8am:
She had 3 bags of saline at SW, all sorts of blood drawn. They thought at one point that she might have a blood clot, hence the CT scan. That came back clear for the blood clot, but showed that she has pneumonia in both lungs. We were transferred to Randall's Childrens Hospital in Portland.Saw a dr about 12:30am and she told us she was waiting for the xrays to get more info on the pneumonia, and tested her for strep, as her throat was VERY red. We don't have the results from that yet, but its early in the day still.She is on oxygen and will be here for 2-3 days, until she can keep her o2 levels in the 90s without help. She is being given 2 different antibiotics (and some probiotics too) because of the possible type of pneumonia. She has had another bag of saline, and how much more will depend on how well she starts eating and drinking.
Update 7/15 9am:
Audrey isn't doing better yet. They said that the pneumonia is slow reacting to meds. She got a new xray this morning, has had a few breathing treatments overnight. The xray shows a bit worse than the one Friday. She is on a different oxygen intake now. They are hoping today is improvement day, or she will have to be moved to peds icu. Send all the get well wishes you can, please! :)
Update 7/16 3:30 pm:
Audrey was moved to picu yesterday about 5:30. She was very pale and wasn't getting better. They did an ipv treatment (it is a percussive breathing treatment) and very shortly after, our whole night changed. The dr decided that she needed to have a breathing tube and a blood transfusion due to her color and her hemoglobin numbers. When they started the sedation and she got laid down, she started spewing blood. They got the tube in and took 100cc of blood from her lungs and 130cc of blood from her stomach.
She had a hard time getting used to the tube, but seems ok with it now. They had to put an iv into an artery because the nurses didnt think they would be able to get all of the blood that the drs were needing for the tests they were running (45!). She is communicating with head nods, signing (such an invaluable tool, I'm telling you!!), and some writing.So, they dont know why, at this point. Could be that her lungs reacted badly to a virus/bacteria and started bleeding. Could be a rare disease, which they pulled two samples from her lungs this morning to verify/rule out.
7/16 9:30pm update:
After this morning's adventures, our day smoothed out. Audrey is stable. Still talking to us with asl and the dry erase board.The tests from the artery line and the samples from her lungs will take 2-3 days to get back. They started her on some strong steroids, as it is one of the treatments for one of the possible reasons for everything. They have been able to slightly reduce the amount of oxygen that they have needed to put through the ventilator. That being said, she is likely to be on the ventilator for a week and possibly more.So, at this point, it's a waiting game. And while I know the pictures attached are of a happy looking Audrey, she wouldn't want pictures of her now, posted online.Audrey needs all the prayers in the world right now. Please just send them out to her!
Update 7.17.18:
Audrey's condition worsened early this morning, to the point of putting her on an ecmo machine. If you don't know, this machine takes the blood out of Audrey, cycles it through the machine, oxygenating it, and returning it back to her body, bypassing her lungs. This gives her lungs time to heal. One of the most concerning things is that they cannot use blood thinners due to the bleeding in her lungs. This adds to the possibility of a blood clot. Thank you all for your thoughts, well wishes, and prayers, they are appreciated. Please know that I have read them all!
7.18 Audrey update:
Audrey had a great and uneventful night last night! She is stable. They have lowered the muscle relaxers so that she can move. This allow her to be able to talk to us again with ASL. Her eyes have ointment in the to help keep them from becoming too dry, so using the dry erase board is on hold for now, so, when mom is too slow at reading the finger spelling, she has started drawing the letters on our palms so we can figure it out. Lol. Try it, it's not as easy as you think it is!!We dont have any certain answers yet, but are slowly ruling out things, and narrowing the search parameters. Right now, she is considered immunocompromised, so visitors should check before coming down, if you are sick, are in a house with people that are sick, or are around you children often, we ask that you don't come visit. Those that do visit, please know that we are limiting the amount of time you will be here.
Thank you all so much for everything! The well wishes, food, cards, rides, ubereats and everything has been so greatly appreciated!! My sister has set up a meal train, if you are local and would like to help. She posted the link to it on my page, so you can go and sign up if you would like.
Audrey update 7.19:
We had another uneventful night! She was taken off some meds, put on others. To give you an idea, she started the 7pm nurse shift with 9 meds going into her iv (and had already been taken off 3 or 4 during the 7am shift.) She also has 3 meds going in through her feeding tube.We are still searching for answers. Some things have been eliminated, some things just pose even more questions instead of removing them.We are happy for an uneventful night, however, we still have a long ways to go. We are looking at 2 more weeks (or more?) On the ECMO machine. Then still more time to recover from the breating tube, and so forth.
Audrey is worried about her friends. She wrote a note to her friends to contact her, however, she hasn't been able to focus on her phone. So, friends, don't think she is ignoring you!
Audrey update 7/20:
So, Ken seems to be so much better at writing these big long updates. But, that's ok. We have no significant changes at this point. She did well overnight, with no additional need for pain meds. (she is on a constant drip, with the ability to have more input into her iv) Today there were more tests done, a new xray (done daily to measure changes), a bath, and had her tubing rearranged so that she is able to be somewhat seated in her bed. She will appreciate that!We were informed that we are looking at about 6 weeks before getting off the ECMO machine. Then you have the general healing time with physical and occupational therapy. This is not going to be a short haul.All that being said, she is in a good spot right now. While she isn't 'significantly' better, she is not worse. And that is the least that we can ask for!!
I know that we have said this already, but thank you so much for your positive thoughts for Audrey, whether they be prayers, good thoughts, positive wishes, or whatnot, anything positive to help her become healthy is welcomed. Honestly, we don't have the brainpower to be able to respond to every message, though, we do read them.
Audrey update 7.22:
Today Audrey's breathing tube was swapped out for a new one that is slightly bigger. This will help her to not breathe around the tube, and be larger to get the gunk out of her lungs.
She slept a lot today, as they used many drugs to make the swap happen. She is in some pain this evening because of it, so we are trying to keep on top of it.
Multiple times today, Audrey has tried to get out of bed. While this sounds good, with her still on the vent and on the ECMO machine, this is not good!
Today has been a decent day, we are all about decent days!
My sister has set up a meal train, if you would like to help with meals. I will add the link here, probably tomorrow, or you can find it on my page.
Amy has set up a go fund me account to help with bills and such so that we can be here with Audrey. I will add the link for that as well. (Also findable on my page)
Thank you everyone for everything! It is so very appreciated!
Audrey update 7.23:
I know it's a bit late, but I remembered as my head hit the pillow, and it just wasn't happening.
Audrey, for the most part, had a good day. Sat up, had some good ECMO tests, had some OT for her arms, and slept a lot.
Still no answers for everything, but hoping for more answers soon. Even if we dont get them, as long as she is on the road to recovery, we are happy.
Audrey Update 7.24:
Audrey has had a good day today. We are lowering some of her sedation, getting her to sitting a bit more each day. She is interacting more and more each day.
It is fantastic to see her personality showing up again! (Even if it is the moody 15yo Audrey that is showing up!) We didn't get an Audrey smile today, but we did get some of her sassiness and some of her 'don't touch me' mood. (which, can't really blame the girl, people are touching her all day long!)
Today she was taken off Heparin, and that will be one more step for the better! We are down to only 3 meds via IV! All systems are staying strong or improving!
Every step forward is a great step!
Audrey update 7:25:
Today was a good day. We have had quite a few chit chats, had physical therapy stop by, and had Audrey reach her "touch" limit. She is done with people touching her. Can't say as I blame her!!
We have taken some big strides, but want to make sure we are going to stay headed the right direction before we celebrate.
Audrey Update 7/26:
Audrey has made some great strides the last couple of days. Yesterday she was taken off ECMO! We didn't share yesterday, as we wanted to make sure that she was stable for a day. Today she had a kidney biopsy to try to get some more answers, and we won't know the results until mid next week.
She is making great eye contact with us, mouthing words, signing some. We are slowly weaning off meds, and settings on the vent machine, so that she can get off of that soon.
These time frames are different than what we had originally, different from what they were just at the beginning of this week, and far better than any numbers we had heard as of yet! We are so proud of our warrior princess! She has fought so hard to get back to healthy!
Thank you to everyone that has helped with prayers, good thoughts, meals, support, cards, donations, and anything else I may have missed.
The donations received with this will go towards many things, any medical needs that Audrey has, including post release counseling, the volume of follow-up care that's going to be involved as the overall infection in her lungs has so far been beating back the underlying diagnosis that allowed that infection to take control of her lungs is still undiagnosed and will include months of follow-up appointments and testing, and replacing the income that I have lost with being at the hospital with her this whole time. You can find the link to that here: https://www.gofundme.com/5uoj220
Kelly has set up a meal train for us. The food that we have gotten already has been delicious, and so very generous! She will be adding days, as we will be here longer than what is there. If you would like to make a meal, but can't get it delivered, you can let Kelly or Amy know, and they will make sure that it gets to us. You can find the sign up for that here: https://takethemameal.com/TDTZ7528
Thank you again, everyone, for everything!
Audrey Update 7/27:
Today has been a bit of a roller coaster. We had a bronchoscopy this afternoon that showed there was still some bleeding in Audrey's lungs. (not as much as before, but not as well healed as everyone had hoped for) Samples were collected and sent off for review.
We received some information back today from the biopsy, and we believe that we have the beginning of the understanding of the underlying issue(s). We are still days away from having a firm "this is what it is" type of diagnosis. But for the first time, we have a hint of what might actually be happening, and what we can do for Audrey to help her get truly better.
We are unsure of how long we will still be at the hospital, we know that it will be at least 2 weeks in PICU.
I want to thank all of the people that have brought us dinners and lunches, and coffees. Kelly, Cindy, Jason, Farley (Amy), Colleen, Autumn, Genevieve, Bridgette, Jessica, and Ruth. (I will be asking about recipes at a later date for some of the deliciousness that has been graced upon us!)
Thank you to Angelique for being the go gettum gal in getting Kami and Evan to the hospital most every day. Thanks to Kody & Dillon for visiting and driving as well.
Thank you to everyone that has donated on the Gofundme page (and those that have donated in person). Every bit of that helps us to help Audrey.
Thank you to those that have sent gift cards, they are perfect, and will be put to good use!
Many have sent cards for Audrey, we are reading them to her, and they are so sweet! Some have sent photos and drawings, those have gone up on the wall as well. They are all so sweet and heartwarming! Thank you so very much!
If you would like to help with a meal or the gofundme, I am putting the links below. You can contact Kelly or Farley if you cannot deliver the meal.
Meal: https://www.TakeThemAMeal.com/TDTZ7528
Gofundme: https://www.gofundme.com/5uoj220
Audrey Update 7/28:
This is going out a bit late, because we made it an early night last night.
Audrey got some new meds to see if they would help her lung bleed, and get us on the path in the right direction. She also got another unit of blood. We are slowly weaning her off of her pain meds, based on how much pain she is or isn't in during the day.
Her PT and OT stopped by, and she got to spend some time with them being stretched, and also got a lot of sitting up straight time.
With her lungs still being weak and healing, those few activities took a lot of energy from her, so she slept a good part of the day.
She had some visitors yesterday, and was able to interact a bit more, and we even got a couple of goofy grins from her. It was great to see Audrey coming back to us.
She is getting stronger every day, and is such a little fighter!
Audrey Update 7/29:
Today was a good day for Audrey. We are weaning off more of the pain/sedation meds. We did some PT and some OT including the hand bicycle. We did a whole lot of sleeping and trying new laying positions to help clear the lungs.
At the shift change, one of the night nurses came in that Audrey has had in the past, and actually had Audrey giggling. I would say it was the best sound ever, but it's still silent, so I will have to go with it was the best sight ever.
We are slowly allowing more visitors, however, please keep in mind that she is highly susceptible to catching bugs. So we ask that you not try to see her if you are sick, or have been around sick people. Please do NOT just show up hoping that you will be able to come in and see her. It is likely that you will be turned away. Audrey's health is more important than anyone else's hurt feelings for not being able to visit with her.
She is still fighting the good fight, and we are all so proud of her!
Audrey Update 7/30:
Today was half good, half not. Audrey started off the day EARLY, and was super chatty with her night nurse, full of smiles and sass!
Her PT and OT went great this morning, and she was sitting up off the back of the bed.
She had a couple of friends visit, and I do think that was the highlight of her day. :)
The not so great side is she did throw up a few times today. No one likes to do that, so it made her feel a bit extra crummy. We believe it was a side effect of some of the meds that she is on, and not an actual sickness. We are watching closely to make sure!
I know she misses her friends, and hopefully soon she can have more visit. She just doesn't have the energy for many visitors just yet.
Thank you to everyone for all of your well wishes and prayers, they are greatly appreciated! And thank you to my fantastic hubby, who is out working so that I can be here with Audrey.
Audrey update 7/31:
Today was very much the same as yesterday. Good for parts, a little bit pukey for other parts.
We had some ventilator settings lowered again today, and will keep doing that to get her closer to being off of the vent! That is exciting for everyone!
Audrey is loving her visits from friends and family, though they do tire her considerably. Today she read through every single card we have gotten, even the ones that were on the wall already. She smiled at all of them. Thank you to everyone that has sent a card. They really did brighten her day.
I know it is a short update today, and in many ways, that is a very good thing! It means we aren't going backwards!
Thanks to everyone for all of the things. :) Food, thoughts, prayers, gifts, donations, etc. They area ll very much appreciated.
Audrey update 8.1:
Today has been a great day! So many accomplishments!
First thing this morning, we got the breathing tube out! Audrey was a rock star (as always) and didn't need any extra oxygen after she got the tube out! She then saw the speech therapist to check to see if she could eat. She got to have the apple juice that she has been asking for, for more than a week, apple sauce, a bagel with cream cheese, and scooby snacks also with cream cheese. She was able to eat all of them with no issues! This means that she is allowed to eat soft foods, for now, until she builds up her muscles a bit more.
She was also weaned completely from one of her pain meds, and tonight will be the scale down of another. I am sure she will do well with that.
As to a diagnosis. We have a working diagnosis, there are still missing answers, but those are answers that we will likely never get. While we don't like it, it is the nature of the beast.
Audrey has been diagnosed with an auto-immune disease, called Paci-Immune GN. I will give some information here, but please know, we do have more information, and are working with the doctors in regards to this. There are two categories that one falls into with Paci-Immune GN, it is either GPA or MPA. GPA is the more common occurrence, and it is diagnosed in 7-10 people per million. (so, rare) MPA is diagnosed in 1-2 people per million. (so, even more rare) Audrey falls into the MPA diagnosis. This is a genetic condition, we do not know why it chose now to show up.
The Paci-Immune GN caused her immune system to do a couple of things. 1. allow another infection, PJP, to infect her lungs. 2. her immune system attacked her lungs. These two reasons are why she was bleeding in her lungs.
Yes, she will have an ongoing treatment for at least a year, but likely longer than that. No, we don't know what that looks like just yet, as we have been focused on her healing in the 'right now'. We have a great team of doctors working with us and her to figure out the diagnosis and how to continue her care from this point on.
I know Audrey is looking forward to being out of the hospital and returning to a normal life. We just don't know what the new normal is going to look like. Maybe it will be the same as before, just with daily meds? Maybe it will be drastically different? We don't know at this point.
Thank you to every one of you that have helped in any and every way. It really is appreciated. The meals have been fantastic (even if we forget to say something), the prayers and positive thoughts have helped tremendously, and the donations make it possible for me to be by her side. Thank you, again!
Audrey Update 8/2:
Today we continued to make progress! More step downs on the pain meds, more awake time, and more doing the normal every day things.
We sat up with no back support, we dangled our legs off the edge of the bed, and we even stood and moved to a chair today! These are all great steps! All of these things are easy for us, but when you haven't done any of these things for 3 weeks, it becomes a serious workout!
We had some bagel, some mashed potatoes with gravy, and a full bottle of Poweraide. Audrey met all of her goals for the day!
We are so proud of her! She has shown us how strong she is, and it is amazing!
Audrey Update 8.3:
Today we left PICU! Audrey has been getting better each day, and so they moved us to a "regular floor"!
She had PT this morning and got to ride around in a wheel chair. What a treat!
We are still working in eating and strength, and stamina, and they will come in time!
No other big updates from us today, we think those are pretty big though!
Thank you everyone for your comments, prayers, positive thoughts, hugs, meals, donations, and anything else I forgot to mention!
Audrey Update 8/4:
We have had yet another great day! It was Kami's birthday (yaaay!) So we did all the things!
First we had Pet Therapy
Then we had breakfast
Next up, NG tube OUT!
Then onto PT, and a trip to the first floor garden
Then onto OT and a real shower
Next up, lunch!
Then out to the 3rd floor garden to have cupcakes and ice cream with Kami and some family
Some rest time
Then off to deliver the extra cupcakes to the nurses on this floor and up in PICU too.
Then we had some dinner
Now waiting for bedtime.
It was a busy day with so many wheel chair rides! Stamina is getting better with each hour. She is excited to be getting better, and happily looking forward to going home. (no, we don't have a date or a plan for that just yet)
Mini Audrey Update 8/5:
Audrey's white blood cell count is very very low. If you planned on coming to visit, we ask that you not be sick at all. No sniffles, coughs, fevers, etc. She currently doesn't have the ability to fight off anything.
While we know that everyone wants to visit, we ask that her health take priority over visiting wants.
Make sure to check in with me or dad before coming up, so that we don't overwhelm her with visitors.
Thanks again, everyone! Please let me know if you have any questions!
Audrey Update 8/6:
Update 8/6:
Sorry for the no update yesterday, I forgot!
Audrey has had a great last couple of days! We have had PT every day, and she has grown her strength by leaps and bounds! Yesterday we walked a short length of the hallway a few times. Today we walked the entire length of the hallway!
We got to do some arts and crafts today, and she got a few more colored pencils and another coloring book. She got to pick out a new costume, it's a Mickey Mouse onsie!
Yesterday she was released to full regular meals (no restrictions!) and ate a whole red robin chicken burger AND all of the fries (except one)!!
Today we had breakfast in the garden, it was perfect weather for it!
We have had a few friends and family visit in the last few days, and it has been great! Tonight was sibling dinner night, so mom and dad were kicked out for a few hours. I'm told it was a good night.
We are waiting for the PT rehab doctors to come evaluate her to determine her ongoing care. (doing in patient or out patient rehab)
We are still working with zero white blood cells, so anyone that wants to visit needs to be absolutely well.
Thank you everyone that has sent cards. We have them all put up in the room, and she has read everyone of them. All of the nurses that come in love to see them as well!
Thank you also to those that have donated their time and resources for dinners (and lunches and breakfasts), and those that have donated to the gofundme, paypal, cash, or gift cards. They have been greatly appreciated and so very helpful!
Thank you again, all so much!
Audrey Update 8/7:
Today has been a pretty fantastic day!
We started the day with Pet Therapy. Bear was a big guy, and drooly! But any day with a pet is a good day!
Then we moved onto Doctors visits to find out what is happening with meds and will continue to happen.
Physical Therapy meant speeding up the walking pace, and even a few stairs!
Dinner field trip to the Heartbeat Cafe with Evan and Angelique for some yummy burgers.
No IV being hooked up means that the costume can be tried on. She really likes it! Thanks to the Chelsea Hicks Foundation for the costume and fun things!
Audrey Update 8/8:
Today has been a pretty quiet day. OT visited and gave her some strength building tasks and had a few visitors.
More meds being weaned from the rotation, blood tests still showing fewer white blood cells than we want to see.
We got more cards for the card wall, and have gotten them all put up.
Thank you everyone for your cards, well wishes in all forms, donations of food and money. They are all very much appreciated!!
Audrey update 8/9:
Today has been a good day. We walked down to the lobby and got hot chocolates to go with our breakfast muffins from Amanda, then had some more pet therapy.
We did lots of walking today to work on stamina. She is getting stronger each day! We went and searched out the Rhume office, and found this outside of the elevators. It's made up entirely of Legos!
Thank you everyone for everything you have done for us so far!
Audrey Update 8/10:
Today we got some good news, Audrey's white blood cell count has started going up! Yaaaay!! We still have to be careful around others, but it is headed in the right direction!
(as a side note, for future reference, if you plan on hanging around Audrey this fall/winter, you WILL need to have a flu shot. So, yes, this family that has never gotten one, will ALL be getting flu shots from now on, and forever. And you will too, if you want to spend time with her)
We had PT again today, and did a total of 15 steps! Which is a great improvement from the other day!
We are walking more and more each day to build the stamina up. It will be a long time before we are back to normal . . . but every day it is better!
Thank you everyone for all of your support, it has meant so much to all of us!
Audrey Update 8.11:
We have the greatest news!
Audrey came home today!!
We are so happy! Trying to get our new normal set up at home, so we ask for no visitors for a couple of days.
To explain a little bit about the goodbyes. In the lobby they have hello in a ton of languages. It was only appropriate to say goodbye in a few.
Thank you all so much for everything!
Organizer and beneficiary
Amy Leeann Farley
Organizer
Vancouver, WA
Michelle Johns
Beneficiary