River
Pearl Clutcher
Posts: 3,530
Location: Alabama
Jun 26, 2014 15:26:04 GMT
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Post by River on Sept 6, 2023 13:11:00 GMT
Sending as many good vibes, positive thoughts and some prayers your way. I'm so sorry you have to deal with this. I've been there and done that unfortunately myself with my DS's growth hormone medication.
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Post by mikklynn on Sept 6, 2023 14:01:01 GMT
Oh, my gosh, this makes me SO MAD. I'm sending all good thoughts and vibes for a quick resolution.
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peasquared
Drama Llama
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Posts: 5,535
Jul 6, 2014 23:59:59 GMT
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Post by peasquared on Sept 6, 2023 14:01:41 GMT
Sending all my positive vibes your way. You should NOT have to deal with this, I'm so sorry.
I hope you are able to get it before your DD has any adverse effects. Frustrated for you!
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Post by slowjoe on Sept 6, 2023 14:23:58 GMT
This right here is why our US health needs an overhaul. Because the people with medical degrees that are supposedly here to make sure patients receive great care and not doing that and instead cause more issues. US health coverage sucks. A lot. My wife is from Russia and loves everything about living in the U.S...except our healthcare. She's like, "even Russia has nationalized healthcare."Crossing finger for you.
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Post by malibou on Sept 6, 2023 15:08:28 GMT
This is insanity. I am so sorry they are messing with you guys again.
Is there anything I can do?
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Post by essiejean on Sept 6, 2023 15:36:33 GMT
frustrated as well for you! Good vibes coming your way
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Post by anniefb on Sept 6, 2023 19:06:55 GMT
So sorry you're having to deal with this. Sending positive vibes your way for a breakthrough.
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gramma
Pearl Clutcher
Posts: 2,920
Location: Sacramento, Ca
Aug 29, 2014 3:09:48 GMT
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Post by gramma on Sept 6, 2023 21:43:35 GMT
Did she get the meds she needed today?d
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pantsonfire
Drama Llama
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Take a step back, evaluate what is important, and enjoy your life with those who you love.
Posts: 5,052
Jun 19, 2022 16:48:04 GMT
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Post by pantsonfire on Sept 7, 2023 19:16:31 GMT
Delivery came today.
Sorry this will be short as we are at Children's for ds. CT came back with not good news.
Immunology sends request to PCP.
PCP sends request to insurance.
Insurance approves meds/home health pharmacy. Sends acceptance back to PCP.
PCP requests UA department if medical group (who PCP belongs to) for agreement if authorization.
They denied it. Once insurance approved, medical group can not deny access.
This is the 6th time medical group has done this.
State filed expedited case. Got approved yesterday. Delivered today
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pantsonfire
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Take a step back, evaluate what is important, and enjoy your life with those who you love.
Posts: 5,052
Jun 19, 2022 16:48:04 GMT
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Post by pantsonfire on Sept 7, 2023 19:18:10 GMT
See OP for what is going on with ds.
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pantsonfire
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Take a step back, evaluate what is important, and enjoy your life with those who you love.
Posts: 5,052
Jun 19, 2022 16:48:04 GMT
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Post by pantsonfire on Sept 7, 2023 19:19:03 GMT
BecUse it is a non typical med, and $10000-12000per 4 weeks it has to go through all those steps.
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scrappinmama
Pearl Clutcher
Posts: 4,905
Jun 26, 2014 12:54:09 GMT
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Post by scrappinmama on Sept 7, 2023 19:44:31 GMT
I'm so sorry. You are so right. Our medical system is broken. It's all about insurance profits and the patients are the one who are suffering. I will pray for your ds! I can only imagine how scary this is. Sending virtual hugs to you.
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Post by mom on Sept 7, 2023 19:47:11 GMT
I am hoping all is well with your son. Let know how!
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Post by auntiepeas on Sept 7, 2023 20:16:45 GMT
Just saw your update, sending so many positive vibes to your DS and you.
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Post by christine58 on Sept 7, 2023 20:29:42 GMT
pantsonfire. Oh dear! I hope that it’s really nothing serious. It was picked up on the CT scan. Praying for you and your son.
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teddyw
Drama Llama
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Posts: 6,912
Jun 29, 2014 1:56:04 GMT
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Post by teddyw on Sept 7, 2023 20:50:53 GMT
I’m glad your dd got her med but I’m sorry about his CT results. Praying all is well.
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Post by Scrapper100 on Sept 8, 2023 1:11:01 GMT
I’m glad your daughter got her meds but it’s crazy that you should have to go through this when it’s an ongoing.
Prayers and good thoughts for your son.
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Post by mikklynn on Sept 8, 2023 12:54:15 GMT
I just saw your update. I am so sorry you have even more stress. I am praying everything goes well with your DS and surgery. Giant hugs, dear Pea.
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Post by LavenderLayoutLady on Sept 10, 2023 11:02:34 GMT
Big (((hugs))) and positive thoughts.
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Post by hop2 on Sept 10, 2023 12:31:16 GMT
Hugs. I’ll keep you both in my thoughts
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Post by Ryann on Sept 10, 2023 21:12:45 GMT
pantsonfire I hope DS is doing okay. You and your family have been in my thoughts.
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Post by flanz on Sept 10, 2023 21:15:17 GMT
Thinking of you and hoping greatly that things are improving for you and your family. ((( hugs )))
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Post by iamkristinl16 on Sept 10, 2023 21:15:19 GMT
I hope things are improving for you.
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Post by refugeepea on Sept 10, 2023 22:29:52 GMT
Part 2 - ds got a call back to Children's. A recent CT scan eas ran again and 2 serious issues were found. We are there waiting for surgery consult. This is not good. And I am really freaking out. ((hugs))
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Post by KikiPea on Sept 10, 2023 22:34:15 GMT
You all are going through so much. I’m so sorry. Sending big hugs and prayers your way!
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luckyjune
Pearl Clutcher
Posts: 2,685
Location: In the rainy, rainy WA
Jul 22, 2017 4:59:41 GMT
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Post by luckyjune on Sept 11, 2023 3:30:02 GMT
Just saw your update. Sending positive healing and peace to your daughter and you (((hugs)))
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TXMary
Pearl Clutcher
And so many nights I just dream of the ocean. God, I wish I was sailin' again.
Posts: 2,849
Jun 26, 2014 17:25:06 GMT
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Post by TXMary on Sept 11, 2023 4:04:24 GMT
I’m so sorry for all that you have going on right now. Glad your daughter got her meds and sending good thoughts and prayers for your son and for you!
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Post by katlady on Sept 11, 2023 5:00:56 GMT
Sending good thoughts for your son. Glad your daughter got her meds.
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pantsonfire
Drama Llama
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Take a step back, evaluate what is important, and enjoy your life with those who you love.
Posts: 5,052
Jun 19, 2022 16:48:04 GMT
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Post by pantsonfire on Sept 11, 2023 15:20:47 GMT
Ds has 2 issues going on with his GI system. One was caused by past surgeries (adhesion of large intestion to abdomen) and one has surgery scratching their heads.
He has an opening in his abdomen that is causing his belly button to leak (fistula).
They don't know if he was born with this or if it was caused from prior surgery. Ds at one point was monitored for abdominal hernia but it wasn't that and no one figured it out and he was fine. So that was that.
Surgery has 17.5 years of films to go through (all CT, mri, u/s) as well as finding all surgical notes and what not. Not everything was transfered over to digital but his file is so huge it takes days to work through.
He will require surgery but surgery doesn't know when and what.
Due to poor healing, we all have to make sure it's the right surgery and won't cause any more problems. Any time ds's GI system is messed with it freezes up. A simple surgery for most ended up being horrific for ds.
So we are treading cautiously as we figure out the root cause of the new abnormalitily and what should be done and when.
As of now ds is stable with no infection, no stool coming out of belly button, and no weight loss.
He is being closely monitored and if there is any issue or any fever we are to get to Children's promptly. We also have to keep a journal of any off GI symptoms, leaks, increased stools per day, and pain. This will help surgery team with final decision. I am sure they will consult out as well.
Ds is a very unique case and only 5 kids (last I was told) in the US are like ds. So we can't go off of regular surgery know how. They have to create a plan to him.
Referrals are in so now its time to talk and plan.
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casii
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Posts: 5,476
Jun 29, 2014 14:40:44 GMT
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Post by casii on Sept 11, 2023 15:25:42 GMT
Sending big hugs and love your way. It's a lot on your plate and I wish we could do more to ease your burden.
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