Just a day after my last blog life began to seemingly fall apart....2 weeks later we are all doing OK but let me give you a little recap as I know so many of you have sent emails expressing your concern...here we go:
August 27th: Began having tightening in my chest after dinner which quickly turned into sharp chest pain which shot over my heart and down my left arm. After about 4 hours of trying to stay relaxed and calm and see if it would go away on its own, I gave in. Knowing my Lyme Specialist and Homeopathic doctor where both concerned for my heart to be checked due to earlier chest pain, we were off to the ER. It was 10:30pm.
August 28th: After 16 hours in the ER in two different rooms followed by being admitted and switched to two different floors in a matter of 4 hours the doctor said I had "officially passed the Stonybrook University Hospital Stress Test" Ha Ha...trust me, I was not laughing!!!! They ran several tests including blood tests to see if I had had a heart attack and a CT Scan to see if I had a blood clot in my heart or lung. Everything came back clear which meant the pain was being caused by the Lyme Disease but my heart muscle was functioning well. My Dad and Dan shared shifts and took great care of me while friends and family helped at home. 8:30 pm...22 hours later and with maybe 2 hrs sleep, they released me. The pain was still coming and going but at least I was sure I was not having a heart attack and I could go home and sleep!
Later that evening...We returned home at 9:00pm and found out that our 14mth old (Kai) had not been himself that day. He seemed to be in pain in his stomach and a usually content child had spent much of the afternoon and evening screaming. He was sleeping but Dan and I went up to bed concerned. Sure enough at 10:30PM he woke up panting and obviously in pain. I could not believe I was saying this to Dan but Kai had to go to the ER....my husband would not let me go for obvious reasons so my family and friends came to the rescue again!!! Some went to the hospital to help Dan and some came to stay with the sick, hysterical, sleep deprived mother, ME!!
August 29th: Dan and Kai arrived home around 2:30am. Tests had shown an intestinal blockage which was what seemed to be causing the pain. Diet changes, prune juice and time was the solution. However it all seemed strange to me as I have the most regular son who eats an amazing organic diet...we were just relieved that he was home and ok!! By 3:00am we finally fell into bed!!
August 31st: After two days of some continued pain followed by regular bowel movements and finally a happy baby we thought we were through the worst and our ER days were behind us....NOT SO!!! Sunday morning brought terrible pain again along with a fever which went up to 104 degrees at one point. After many phone calls with the doctor on call, Kai was back to the ER at 4:00pm. Enter family and friends to save us once again!!!
September 1st: Reports came from Dan and my parents all through the day and night from the hospital. Nothing was clear. Still an intestinal blockage, fever unrelated, concern for possible twisted intestine, concern for possible appendicitis and possible surgery...test after test, traumatized baby, drugs to sedate him for CT scan which had the opposite effect, hysterical baby...No Answers!!! Get a call from Dan at 4:00am that they will admit him for observation and one hour later hear noise in the hallway as Dan returns with my exhausted baby as finally a kind doctor says..."take your son home and observe him there and see the pediatrician in the morning!!!"
Five hours later...we all drag ourselves out of bed and back to the pediatrician with a still drugged baby who could not even stand up. They say he seems fine but keep watching him. If fever or pain returns...back to the ER!!!
September 2nd: Wake up to a droopy eyed, crying baby with low temp who still cant walk straight. Try to will myself downstairs to feed him (doesn't happen most days) and help Dan as we are all exhausted. Suddenly I felt everything begin to shut down (familiar feeling) but this time it was different. I slumped into a pile on the floor having lost use of everything. Dan carried me up to my bed. Within seconds I began the worst Herx Reaction yet as my body went into massive muscle spasms or seizures and I was unable to control my body or communicate. My Mom arrived minutes into it and both Dan and Mom remained calm but wondered if they were losing me. A phone call to my specialist confirmed I was having a massive Herx Reaction and to stop antibiotics for a few days to let my body slow down the bacteria die off reaction. I was not able to swallow more than my saliva for hours and soon wondered if I would be back to the ER. Well...we made it through (no ER!!)...but it was a long scary day that left me exhausted and unable to walk for days.
September 3rd-Present: Smaller but similar Herx Reactions continued to happen over the next 5 days as my mind and body slowly recovered and returned to my "new normal" as explained in my previous blog. Kai's fever returned on the 4th but by the 5th he seemed back to his old self.
We are going for further testing tomorrow for Kai as we are concerned for Lyme Disease. The bacteria can pass through the placenta and the breast milk especially when highly symptomatic. Many of his symptoms are similar to my early symptoms including intestinal blockages. I carried and nursed all my boys while fighting this disease unknowingly. Kai is the greatest concern as I was so sick while nursing him. Please pray as we continue to search for answers!
I am still mostly bed ridden but have at times been able to get up and go down the stairs to join the family in the living room. The fight continues as I am stable and back to antibiotics; just waiting to see what tomorrow brings!! These Herx reactions are scary and can be life threatening but it is necessary in order to kill the bacteria and regain health...please continue to pray!!! All our thanks again to family and friends who carried us through another difficult season of this journey...words cannot express!!
At one point I turned to my sister and said, "I just figured out what's worse than being chronically ill...being chronically ill while your child is in the hospital so you can't be there to care for him" Its been a tough two weeks but we continue to trust our loving God!!!
PS. A Herx Reaction: Extreme Die off of bacteria which releases toxins into the system causing a strong onset of symptoms making you feel pretty miserable for minutes to weeks...you never know!
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