What started out as a day to give thanks became a nightmare for me and my little family.
As we all know, planning for a wonderful meal all starts weeks in advance. Trips to the store, finding that right turkey, making sure you have all of the ingredients for those special dishes....
But our weeks leading up to Thanksgiving day should have been a warning sign for doctors, not just us.
Hannah had been experiencing dizziness for a long time, abdomen pain and nausea then really low blood pressure. I took her to our family doctor, telling all of Hannah's symptoms and thought we could get to the bottom of it. Labs were done and all came back normal. Then a few days later, Hannah was complaining of heart palpitations and I then noticed she had a rapid heart beat. Then off we go back to our family doctor. A tilt test was then said what we needed to do next and they would schedule it. I waited and then 4 days later, I was notified about a MRI being scheduled since a tilt test was not an option because they didn't do them here in our state.
A few days later, we went for her MRI, it only took about 15 minutes and she did fine with it. But...her BP was even lower and her HR was even higher. I was told by our family doctor that as long as her heart rate stayed under 100, it called for no concern and for her to increase her fluid intake along with wearing compression stockings. Really?
That's when I requested a cardiologist and got in with the heart DR that diagnosed our oldest, years ago, with vasovegal after passing out while sitting in a beautician's chair having her hair done. It was also the time she was diagnosed with hashimotos and hypothyroidism. Long story short, I had to PUSH for the testing when she was diagnosed after suffering with symptoms of feeling like she was dying and like her heart was stopping.
Now back to Hannah's appointment with this cardiologist. He did a tilt test, and echo and ordered a holter monitor for 24 hours. He diagnosed her with orthostatic hypotension (which means her BP drops when standing and her HR increases trying to bump up her BP. Nothing was wrong with her heart function was in perfect working order. He said nothjing about compression stockings other than how much of a pain they were. He said 8 12 ounces of non caffeinated fluid need to be drank daily along with 9 hours of sleep would help. I knew he knew what he was talking about since he helped my oldest daughter years ago. He knew his stuff!
By this time, it was Thanksgiving morning when she finished her 24 hour testing. She awoke with pain in her abdomen and was nauseous. So much so, that it was hard for her to drink or eat anything. I finally got her to eat a piece of buttered toast and drink some water only to make the pain worse. She wasn't running a fever, so she laid on the sofa all day. I took her BP and it was low, so again, I tried pushing the fluids with no real significance. By the time Dinner was all prepared, she had stated that she was definitely going to enjoy eating Thanksgiving dinner. She got up, walked about 8 steps to the table and she turned whiter than she normally is, her eyes glassed over and she held her hand over her chest saying that her heart was beating so hard. Her Dad laid his hand on her chest and said it definitely was. So back to the sofa. After resting a bit, I took her pulse and it was 108. I told her things were ok, went downstairs and began to get ready telling Mike in private that we needed to go to the ER. Paramedics were called and she was wheeled out since she couldn't walk without being dizzy and her heart beating so fast. Her HR was then 112 and her BP was even lower.
We made it to the ER, she was given 2 bags of Iv's, told that she was dehydrated and that they were going to run lot's of tests since we told them that we had been dealing with abdomen pain for almost 2 years and the other symptoms were toppling on top of another as time ticked by. I think we were there for maybe 2 hours and then it was like a light switch had been turned off...they were discharging her. I won't go into details as to what all happened exactly, but let me say...I am pursuing the hospital.
They discharged her with a HR of 139, she had to be wheeled out and was actually running a low fever. Can you believe this? She was worse leaving than when she first came.
That night, she slept with me. I kept up with her HR and BP...still no better by later that day. By this time I was furious! Thinking about the past 2 years trying to figure out what was going on with her and not being taken seriously. I had stated that my gut told me that it was related to thyroid problems since my oldest and I share it along with my Dad, his 2 other children, his sister and with Mike's dad. Still nothing taken seriously. We were sent home each time the so called tests came back normal.
So, I made up my mind, we were going to another ER and she was going to be taken care of if I had to do something drastic to be taken seriously. So off we went and guess what? She was admitted within the hour! I didn't have to do anything...the proof was in the pudding as they say. We were told that she was possibly having a thyroid storm and her blood work stated her TSH and T4 were low along with elevated liver enzymes and low white blood cells. Hmmm....we were told that they did this blood work at the other ER the previous night. I had the nurse pull up the blood work since they were connected with the other hospital. Guess what....nothing was done as they said they did. We were then told that she was overly hydrated which makes me wonder if she was really dehydrated the night before as they stated.
So, instead of going on about all that we've endured, which would be another 10 pages. I will state that she spent 3 days in the hospital, is undergoing more specialist testing from a GI, an Endocrinologist, a Cardiologist, a neurologist and a NEW doctor! And guess what...we have proof that she has thyroid issues, possibly center hypothyroid which has to do with the pituitary gland which that MRI that was ordered didn't even get a good look at since it was just for the whole head. We were told that it was useless along with other blood work that had been done by our family DR. If I wouldn't have stuck to my gut, my daughter would have just gotten worse and then possibly could have had a heart attack because of her rapid pulse. I had a break down, lost myself for a moment and then cried out to God. He has been leading us to the right doctors and we are finally getting Hannah back. The poor kid has had every symptom of hypothyroidism along with hyper. Finally someone is listening and doing the right tests. I thank God for it all and for the doctors that have helped us.
My husband, Mom, oldest daughter and Hannah's boyfriend were all there for her and for me. I stayed by her side and even slept with her. My girls are my life and I will do anything to protect them and keep them healthy. So please, once again, I am asking for prayers for all of us. I am having thyroid problems that require a specialist out of state, but I have to be here for her testing and to get her well before I can go. Sorry for the long book, but thanks for listening.
oh my, I am so sorry that you are all going through such a tough time ~ sending you (((hugs))) and keeping you in my thoughts and prayers xxx
ReplyDeleteI am praying and hoping things improve. Your daughter must have been really uncomfortable with that heart rate and how frightening. I hope they are on the right track now. The hospital to release her with that high heart rate is just incredible to me.
ReplyDeleteYou will be exhausted. I hope you get some rest and peace knowing the true cause of this is being treated and it is all treatable. Best wishes.xxx
Sounds so much like my story. Thank you for being a strong advocate for your daughter's health and for continuing to fight for answers. It sounds like she has a great team (her family and friends!) on her side.
ReplyDeletePraying for the best,
Barb
Wow Melanie!!!! So glad to kept pushing this and finally got some help for Hannah. How scary to have been through your doctor and then the ER and still could not get her help. As a nurse this is alarming to hear. I am so glad you stuck with your gut and mothers protective feelings and kept seeking out someone for help. Prayers are being sent.
ReplyDeleteKris
Praying for Hannah's full recovery. Your mothers instinct and perseverance are amazing,Melanie. Please keep us updated...hugs...Stephanie
ReplyDeleteI have been praying for Hannah and checking your Facebook posts. I am so sorry you have been going through this! It is harder on us when our kids go through something like this than it is if we are going through it our self. Continued prayers.
ReplyDeleteOh, Melanie! Your poor daughter! I'm so sorry to hear what she's been through but very glad she is finally getting the care she deserves. Sadly, there are far too many incompetent people working ( or NOT working, as the case may be) in the medical field. I have firsthand knowledge of this. In 2001, I had scoliosis surgery that went horribly wrong and I was in the hospital for 2 weeks. When they discharged me, I had to be rushed back to the hospital after 3 hours of being home because SURPRISE, they had sent me home with bacterial meningitis! My dear husband had to yell and scream to the nurses that I needed to see not only MY doctor but a neurologist. I was mostly out of it but I can still remember hearing him shouting in the hallway trying to save my life. I spent a second 2 weeks in the hospital and then went home. An incredibly long recovery followed ,including sending us home with a PICC line I/V that we were supposed to use by ourselves! Can you believe that??? My husband was terrified to have to be the one to change my I/V bags!. I'm so glad you spoke up and kept fighting for your girl.
ReplyDeleteMy heart hurts for all that Hannah, you and your family have been through!~ As a Mom, I have been there a few times having to push when my gut was telling me other than the medical personnel were. I am definitely praying for all of you!~
ReplyDeleteIsaiah 41:10, "Isaiah 41:10Amplified Bible (AMP)
10 Fear not [there is nothing to fear], for I am with you; do not look around you in terror and be dismayed, for I am your God. I will strengthen and harden you to difficulties, yes, I will help you; yes, I will hold you up and retain you with My [victorious] right hand of rightness and justice.
I'm so sorry that your daughter is going through this. It's so hard on a mama to see our children so unwell and can't make it go away ourselves. My husband once said, " Never never never stand between a mama and her child!" You knew what was wrong and you didn't stop until everyone knew. I hate it when Dr don't listion to us moms. We know our children and we fight for them. Stay strong. God will carry you and your daughter through this.
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