#crmowarrior

[phxbrie]

Freedom!!!!! We were released last evening. There is still lots of work to do to figure this out but this can be done with doctors. She is nowhere near 100% but we will get there. Just going to spend the next few days resting and trying catching up on sleep we missed. Thanks for all of the love and support, we appreciate you deeply. https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #Chronsdisease #medicalunicorn #longqtsyndrome #hypokalemia https://www.instagram.com/p/BoUWhfwlG2y/?utm_source=ig_tumblr_share&igshid=1w0sq8v9s1uf

[phxbrie]

day 9 here at phoenix childrens. still trying to get the potassium under control, are attempting tests to fins out why but they are hard to do. for Cushings disease it requires her not to be on steroids or supplements. she had stwroids injected in her tmj so she cant avoid that. they had stopped her valley fever meds but are currently restarting them. hopefully we will see a geneticist here this week to as to sort out that avenue. it's just a loy of waiting and a crazy roller coaster. thanks for your love and support through it. https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #Chronsdisease #medicalunicorn https://www.instagram.com/p/BoMqRKVgbdT/?utm_source=ig_tumblr_share&igshid=10lc45a6pm02j

[phxbrie]

We are still here but we will be moving from the icu to a regular room this afternoon. Now we wait and hopefully the doctors are going to find out why she keeps losing potassium. They want to test for cushings but as long as shes on potassium supplements and steroids, the results will be suspect. so for now we just wait for things to soet out. one plus is this time doctors are taking this seriously and will keep her til they find a cause. thank you for your prayers. they get us through these hard times. https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #Chronsdisease #medicalunicorn https://www.instagram.com/p/BoH11ECgjDK/?utm_source=ig_tumblr_share&igshid=5n6qygyswt9f

[phxbrie]

Today's update: her picc line had to be adjusted as it was causing arrhythmias since her heart is delicate from the Long QT. her potassium is starting to drop again and we are not sure of the cause of this still. Tomorrow the Nephrologist and I will have a talk about ways to sort this out. taking her home when things aren't remedied are dangerous under these circumstances. we miss home and want her beyyer but also need to know why this is happening so we can try to prevent it from happening again. https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #Chronsdisease #medicalunicorn https://www.instagram.com/p/BoGGn1QgVsV/?utm_source=ig_tumblr_share&igshid=srsctmrmysk9

[phxbrie]

Best moment today. A nephrologist who has treated Sam here before came in and looked at her. Said shes not leaving til theres a reason why she is suddenly losing potassium and magnesium. She will be testing the kidneys and also her hormone levels. Some diseases like Cushings mess with cortisol production and other hormones in the body. Though we arent no closer to going home than before, I am so relieved that she's on the case. Now we wait on test results and for her picc line to be adjusted to see if that's why shes having arrhythmia issues, if that doesnt help, more cardiovascular workup in our future. https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #Chronsdisease #medicalunicorn (at Phoenix Children's Hospital) https://www.instagram.com/p/BoCuys0A08f/?utm_source=ig_tumblr_share&igshid=129gorgv1djfy

[phxbrie]

So we are back in the hospital. Sammi woke up this morning with a completely locked jaw and unable to eat or take meds. Her rheumatologist admitted her so they can administer her meds liquid and via IV until her jaw flare calms down and she can get back to normal. She just recovered from a broken foot and is fighting a lung infection on top of all this. we are so tired and just praying for the day life calms down some and we don't get these dramatic interludes in the hospital. please pray or whatever you do that they can get this under control. tha ks for your love and support. https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #Chronsdisease #medicalunicorn https://www.instagram.com/p/Bn27cirAzym/?utm_source=ig_tumblr_share&igshid=hq2qkf4xudsd

[phxbrie]

Back at our 2nd home yet again. Sammi has had swelling in her feet and legs. The last few days its gotten worse. Yesterday her Nephrologist sent us to the Emergency room. They checked labs, ultrasound her legs for clots. All came back ok but her legs are huge and super tender to the touch. She was admitted for further testing. Today the peds team came in and informed us of some odd findings in a bone scan she had this past Monday (6/18). So now we are waiting dor her Rheumatologist, Pain Management Doctor, occupational and physical therapists and her pain therapist to,come see her. This doesnt count any further tests they want to do. She is so tired of being sick, if pills, of being messed with. I am so tired of it all for her. She deserves so much better than this. As I keep saying, we deeply appreciate your love and good thoughts for our family. Thank you for everything. https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #Chronsdisease #medicalunicorn

[phxbrie]

Ever wonder what 1 bloodtest to check humira levels will set you back? I just almost passed out. https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #Chronsdisease #medicalunicorn