July 2018 Prayer Requests

Please add Dani-Mani , GiantsFan (her mom). 

Thanks for starting the thread this month! 

I really love that we have these threads. The world needs more caring.

We just got home yesterday after a week at Mayo Clinic in Rochester. My daughter had two days of clinical testing regarding her sudden arrhythmia death syndrome long qt, had some unexpected bad news which was very unsettling, on Wednesday she had a LCSD left cardiac sympathetic denervation; and a TEE which showed the bad unsettling news wasn't. She then had a really bad allergic reaction to morphine while coming out of recovery from the surgery. It was a really rough long day, a six hour surgery lasted way longer, I was pacing and so anxious as it just kept going and going with no updates. 

Then Thursday she had a ICD (implanted cardioverter defibrillator) placed that can both pace her heart and shock it out of deadly arrythmias. Like having her own built in AED. She also had her LINQ a heart monitor removed as well. 

She has five five holes in her, three like deep stab wounds from the laparoscopic equipment used to reach her heart. They seem to be causing her the most pain. We had a 12 hour trip home yesterday. 

It was an amazing and extremely stressful week, that seemed both incredibly short and incredibly long. She has been awesome through the whole ordeal. 

My friend Heidi a month ago today lost both her mom and dad in a car accident, it's been a hard month for her, and her family. 

Our daughters are strong! Praying her pain eases up. And praying for comfort for your friend.

They really are. We have often thought the whole genome sequencing might turn something up in my girl too. She seems to have too many rare things for them not to be related in some way. Long qt is a potassium ion channel issue, and maybe someday her solar urticaria, and joint issues, and skin stuff, and pain, and hypermobility will somehow have a connection that right now isn't known about. 

It hope yours gets an actual diagnosis soon. 

Zella, I know that you suffer from depression and have many health issues.  However, I want to remind you that when you've had a serious infection it's normal to be even more depressed afterwards.  The meds, the lack of privacy, the environment and the scariness of the infection itself really do a number on the mind.  Please take that into account.  I get what you're saying.  I'm a 3 time sepsis survivor.  Believe me when I tell you that you're not alone.  ((((HUGS)))).

Thank you. That is all true. Being in hospital is taxing, emotionally as well as physically. And it was probably partly to blame for the severe reactions I had the last 3 days. Hugs right back to you; you're awesome!

Love you, Zella. I'm not here as much lately, but you are never far from my heart.

I wanted to give an update. I met with DD therapist today. Her therapist believes she is making much progress. I also told her things seem better at home as well. We went to the psychiatrist on Monday and he increased her meds. She is sleeping. She is eating.

disneypal ----Thank you for starting these threads.....prayer is so powerful ! I'm SO happy to read the update on your friend's dd !!!

theshyone ---Wow, I'm sure you're all totally exhausted! Praying your dd's pain subsides and all of those cardiac procedures help her! You said she handled all of this extremely well; that's amazing!

Also, praying for your friend Heidi---losing BOTH parents, how horribe!  

@calimom2 ---So sorry for all the symptoms your daughter suffers from and that they'll find an answer! Prayers for your son, also.

paget ---Prayers for Hannah.

zella -----Ugh, I am SO sorry! As if you didn't already have so much going on, I hate to hear of your recent hospitalization and all your crying. ((( hugs ))

sueg ----I hope you're still doing well and are either home or going home ASAP!

jeremysgirl ---Wow, such GREAT news about your dd ! Praying the improvements continue!

Thank you all for your prayers. My surgery on Tuesday went well - the surgeon said she was able to get good, clean margins around the tumour. I was released from hospital this morning (Friday), once they could remove the drainage tubes.
I will get histology results sometime next week and have a follow up appointment in 2 weeks where I will get me treament plan. The surgeon is still fairly optimistic that it will only be radiation.

I've been thinking/ praying about Donna's family and their grief 

disneypal .....How is your friend's daughter doing?

zella .....How are you doing? (( hugs ))

Thank you so much for asking! So I was in the hospital for 6 nights with cellulitis around my implanted port. My mast cell disease was very bad some of that time, probably because of the IV antibiotic. After getting the port out and a new PICC IV line put in, I came home. The first week was rough. I'm doing better now, but I may have an infection in or around the PICC. I'm on oral antibiotics, and am just watching it for now. I don't know why things have suddenly gone haywire, but there it is. Honestly, though, any day I don't feel nausea is a good one. I've had maybe 3 of those in the last 3 weeks. 
Family things have improved. My older daughter, SIL and granddaughter have moved out and are all doing well. Younger DD is doing rotten, though. She has mast cell disease too, plus fibromyalgia, chronic daily migraines, and some other issues. Poor kid. We're enjoying the sunshine and long days, even though mostly we just look from inside the house, lol!