Posts Tagged ‘emergency room’

One of our most popular posts:  Originally written by Mik on Friday June 30, 2012 – Reblogging for our new friends.

This week has definitely been the definition of crazy. For a few days, at least, everything was going pretty decent in my life  despite having had some “hiccups” here and there. I enjoyed the blessing of having a period of time where things were calm and my health seemed to be at a stable state. (Stable in being that I can get through the week without any major episodes or symptoms.) Though it was calm, it was unsettling….like the silence before a storm. It felt that way because anything “normal” in my life is abnormal to me and I am so used to everything around me being chaotic and out of control. Nonetheless, I did not take this moment of time for granted and enjoyed it as much as possible.

So I was not surprised when that all came to a quick end this week.

This previous Wednesday, I woke up and went about doing what I usually do, when a dull pain in the upper left part of my abdomen started to annoy me. I ignored it, writing it off like most of the daily aches and pain I deal with. But around five that evening, I was finishing up some online schoolwork when, out of nowhere, started to feel really dizzy and had an uncomfortable internal heat.

166633254932220462_hE9E3kFQ_fI got up from my desk so I could go lay down until these feelings went away, however, gravity had a different idea.  After standing,  a stronger wave of dizziness hit and my legs suddenly became weak and gave out underneath me. I mentally rolled my eyes as I said hello to the all-to-well acquainted floor, and after doing a mental check to make sure I did not injure myself, I called for my mom to come and help me . She and my brother came to assist me, while my  legs were an equivalent to a jelly fish.  So the task of getting me from the front room to the bed took a little longer than expected.

After getting settled in bed, I had to rest until my blood pressure rose back to normal and wait until my legs decided to work again.  (After each collapsing episode it takes awhile for me to get up and move around because my legs can lose their function.)  However,  that dull pain in  my left side that I had been ignoring started to increase until it became extremely uncomfortable.  About an hour later, the pain was to the point of  where it became unbearable and I was nearly in tears. With the pain becoming worse in a short amount of time, and it starting to spread up into my chest, my mom rushed me over to the Memorial Hermann hospital ER.

The emergency room was incredibly busy so it took awhile until one of those ER rooms were available.   By then, I could barely sit up anymore due to all my symptoms, especially the pain, being off the chart. So when we got settled in the room and the doctor ordered some medication to bring me some relief from my pain,  I could have sworn the angels of Heaven themselves sang Hallelujah.

All of the blood work and testing went by in a blur, and afterwards we were waiting  for the results to come back. During that time, I started thinking over about my easygoing days and how much I enjoyed them while they lasted. If you rewind just a few months back, my usual symptoms and even some new ones started to spiral out of control.  It was frustrating because even though I have been on a series of medications that had been working for so long, that didn’t stop the cycles of intense symptoms.

Over the course of previous episodes, I went  through rounds and rounds of tests and I was always disappointed and sad when the results came back normal….and to some that may sound weird. Why am I disappointed because of that? Wouldn’t anyone be happy to have this so called good feedback? In my case, it is frustrating to get back “normal” results because that means that my team of doctors goes back to the drawing board on what is triggering these extreme episodes.

6262012I know if I received an official co-existing diagnosis that resides along with my Dysautonomia, it would not make me all healthy again and solve everything. It would at least, though, be able to help my doctors to figure out another form of treatment  to help calm my out-of-control symptoms.  So when the ER doctor finally came in with the news that all the results were “normal”, I crumpled into tears as soon as he left. I want to know what is causing all of my pain, but what I want to know even more is to find out why I am abnormal and extreme in even the Dysautonomia world.

Before I go on, I want to say to those that read this that are suffering from Dysautonomia like I do, or from any other chronic illness; do not be discouraged from what I have written here.  Whenever I receive disappointing results or whenever I cry, it is never out of losing hope.  This just means that there is another obstacle to overcome, and over every obstacle is the other side, which hope lies.

Due to my  stubborn nature, I NEVER give up. I’ll never give up trying to fight through an obstacle. The hospital is my battlefield, Dysautonomia is my enemy. My tears are just a sign of my battle.  I don’t know what different things you are going through, all of our stories are different, but at the same time they are similar:  we are the “hidden” with invisible illnesses that can wreak havoc in our lives.  We are in this battle together.

I hope I can inspire you to never give up, to never stop fighting.  Always keep moving forward through your obstacles because eventually you will win and get to the other side. So I kept this mantra in mind when they sent me home and it brought me comfort.   However, I will not lie.  I was down for the rest of the week and had pity parties here and there, but I shook it off afterwards and kept on pushing forward.

The good news is that after days of resting, I have been slowly recovering and was even feeling strong enough to go see the outside world this past weekend. Right now, there is nothing else anyone can do at the moment until my main cardiologist returns from out of town. But until his return…..I will just have to take it easy and treat all my symptoms as needed and sing the good ole Hakuna Matata lyrics.

 Now for the Dys Song of the Day:  I always flip to this song on my ipod (which is practically attached to my ears 24\7) when I’m having a low day or in need of some empowerment . It gives me a reminder that God is still there and that He is watching over me.

Skillet- Whispers in the dark

No

You’ll never be alone

When darkness comes I’ll light the night with stars

Hear my whispers in the dark

No

You’ll never be alone

When darkness comes you know I’m never far

Hear my whispers in the dark

Whispers in the dark

 


Mik’s Hidden Hearts Alliance is dedicated to bringing positive encouragement to homebound and hospitalized teens who suffer from Dysautonomia and other life-changing chronic illnesses through social outreach, Hope Kits, Hospital Teen Program and Dysautonomia Awareness.  #dysautonomia #chronicillness #Hope4DysTeens #TheHidden

Please help spread awareness!  Like our Facebook and Twitter pages.

 Learn how you can help MHHA here.

We appreciate all of our angelic sponsors.  With every big or small donation, we are able to help more Hidden Teens.  Special thank you to our Gold Heart Sponsors at Lamb Foundation for Dysautonomia ResearchSpero Rehab and J Knesek & Assoc.

 

Advertisements

Posting from Mik’s Mom:  As a mother who ultimately has little control over my daughter’s health, it is a really hard pill to swallow that after helping her to lay down, drink fluids, get her medicines, research like crazy for the latest Dysautonomia information, etc., there is nothing I can do to fix her.  Which leads me to what happened this past Wednesday.

Wednesday afternoon, Mikaela said to me that she feels really really “off”.  Now, Mikaela is far from a complainer.  If anything, I have to pull it out of her what symptoms she is having when I know she is having a really rough day.  For Mikaela to come up to me and tell me straight up that she is feeling “off”, I knew something was really wrong.

I immediately called our wonderful general doctor, Dr. Defriece, just to see if he could take a look at her, check her stats, etc.  (As you know, the local ER has not always been the most productive of trips.)  They were so sweet to tell me to bring her in asap.  However, as I had them on the phone, I looked at Mik and asked her if she was alright.  Because she started doing this odd seizure-like eye movement for a full minute.  She told me in a very droopy, slurred voice “I don’t know”.  I hung up the phone and just as soon as I got Mikaela in the car, she clutched her chest in pain and said, “Mom, we need to go straight to Children’s Hospital now.” (Memorial Hermann Hospital in Houston at the medical center)

Not hesitating (because again, Mik NEVER asks to go), I skipped the doctor’s office and took her to Children’s emergency room about 40 minutes away where we knew her cardiologist team could see her directly.

As I wheeled her in the ER, she told me she does not know how much longer she could hold on (to consciousness).  I arrived at the registration desk and as soon as I gave them her name, Mik completely passed out.  As she “came to”, she was really slurring her words, could not hold her head up and was trying to tell me she did not feel good.  I told the staff she needs to lay down asap.  A nurse came out to help me get her to a room when Mikaela started having a full body seizure-like episode and began going out of consciousness again.

We got her in the room and they quickly began checking all her vitals.  Good news was her blood pressure was in normal range (which is so difficult for us to keep at this level… even with 3 doses of Florinef per day).  The question was:  why is she having a full blown episode if her bp is up AND she is laying/sitting down?  (9 times out of 10, she usually collapses or faints from standing up.)  Plus, her right leg was in a lot of pain (nerve pain) and unable to move it (normal after one of her episodes).

One of Dr Numan’s (remember, he is our angel of a cardiologist) fellow doctors came in to assess her.  Long story short, one of the things he checked was what her heart would do when he had her sit up.  Just from the act of sitting up, her bp went up 25 beats and she passed out again.  He had her lay back down and went to consult with Dr. Numan.

While we were waiting for Dr. N, I quietly prayed for answers.  I used to pray for 100% healing, but since God obviously has a plan for all of this and we are into this illness now for soon to be 2 years, I now pray for answers and a treatment plan that will let her feel semi-normal.   (BTW, we sincerely believe prayers work no matter what God’s answer is.  Because of all the prayers we have received, I know Jesus has healed Mikaela.  No, not necessarily in the physical sense, but a mental and spiritual healing.  She has a maturity and insightful wisdom way beyond her years.  She is one of the strongest people I know and has such patience with her body’s limitations and always has her focus on Jesus, His plans for her and helping other teens in her situation.  She is 95% of the time optimistic and does not pity her situation.  That, my friends, is a miracle.).

Dr. N came back a short while later with his colleague.    He was concerned she was having a really bad reaction to the Myasthenia Gravis medication she began a few week prior (causing the weird seizures).  He decided to increase her tachycardia medication, stop the Myasthenia Gravis medication and gave her a new medication for this unrelenting nausea.  Because there is no magic machine or surgery to help with her illness (I wish!!), having her stay at the hospital at this time was not productive so we got to go home.  (We love sleeping in our own beds!)

After seeing Dr. N, who is like a life-line / security blanket to us rolled up in one, the gravity of Mik’s situation that day really fell on me.  (sorry about the gravity… no pun intended!)  Normally, I can handle all of this in stride because Mik is such a strong “Hakuna Matata” teenager.  We parents do what we have to do, place one foot forward and try to stay joyful despite our kids circumstances in order to bring them comfort.  However, this stage of this journey is bringing on some new teary-eyed emotions that with some people may have come in the first few weeks when she fell ill.  This illness seems to be here to stay for an undetermined amount of time and there is ultimately nothing I can do about it.  It is heartbreaking.  I have no control.

From the stories I am receiving from some fellow moms whose kids have this frustrating illness, many of them do not have the medical support and caring that we have.  The fact that Dr. N and his team does not give up on Mik’s case, I feel blessed and thankful and pray that my fellow moms, most out of state, will find a team to care for their kids just us much.

So, as Dr. N finished his recommendations and said he wants to see Mikaela in his office in 2 weeks, we were waiting for the nurse to bring us the discharge paperwork.  I remembered I had one more question (if you know me, I always have at least one more) and went out in the hall to see if the doctors were still there.  I found Dr. N’s colleague and asked him if he thought Dr. N felt comfortable if Mik has another episode when we leave and try to get her in the car.

Now, mind you, I am being normal mom working out logistics, not really focusing on the “emotions” of the day.  With a set of caring eyes just as heartfelt as Dr. N’s, he told me if she has an episode, they would do anything to make her comfortable, including keeping her for overnight observation.

Seeing those caring eyes [here comes my I-hardly-release-them-tears-especially-in-public] I start blurting out all my fears:  “I just don’t know what to do for her anymore when she has these bad episodes.  Do I take her to the ER?  Do I just keep her at home when she collapses/can’t walk/ has the occasional seizure?  (I know in my heart at this stage of Mik’s journey in 99% of her episodes, we can only treat her symptoms which means the ER trip is semi pointless and leaves me feeling like I am abandoning my girl by not having her “treated” at the ER.)

With understanding, he told me this illness is one of the most difficult things he has to deal with as a physician because no matter how hard we try with cases of Dysautonomia as debilitating as Mikaela’s, it can be frustratingly, well,  chronic and we have to work to find which treatment option works for her.  However, he promised, they would admit her in the hospital during her bad episodes for observation if I felt she needed it.

No, I do not want her admitted for observation – a hospital is not a place to get rest.  I want them to build a magic box that will fix her.  But until that time, the fact that he acknowledged my fears, his own frustration on not having the answers right now,  his caring and the team’s commitment to helping Mikaela made me feel heard and not hidden.

For this, I will continue to count my blessings.

Reason to smile this week:  (*I will let Mikaela give you all the details when she feels up to finishing her blog, but I will give you a quick summary.  We were about to be dismissed when they had their staff change for the evening.  In comes our new nurse with the paperwork and oh my goodness!  We thought GQ lost one of their cover models because he did NOT look like your average nurse plus had the caring personality to boot!  What made me really smile?  The fact that Mikaela’s heart monitor showed her bpm jumped 30 beats when he walked in and there was nothing she could do to hide it.  So glad she was laying down so she didn’t pass out!  We laughed after he left the room when I told her maybe it wouldn’t be a bad idea to pass out when he was around : )  (Hey, you have to find the humor in every situation!)

www.MiksHiddenHearts.org

Written Friday June 30, 2012

This week has definitely been the definition of crazy. For a few days, at least, everything was going pretty decent in my life  despite having had some “hiccups” here and there. I enjoyed the blessing of having a period of time where things were calm and my health seemed to be at a stable state. (Stable in being that I can get through the week without any major episodes or symptoms.) Though it was calm, it was unsettling….like the silence before a storm. It felt that way because anything “normal” in my life is abnormal to me and I am so used to everything around me being chaotic and out of control. Nonetheless, I did not take this moment of time for granted and enjoyed it as much as possible.

So I was not surprised when that all came to a quick end this week.

This previous Wednesday, I woke up and went about doing what I usually do, when a dull pain in the upper left part of my abdomen started to annoy me. I ignored it, writing it off like most of the daily aches and pain I deal with. But around five that evening, I was finishing up some online schoolwork when, out of nowhere, started to feel really dizzy and had an uncomfortable internal heat.

I got up from my desk so I could go lay down until these feelings went away, however, gravity had a different idea.  After standing,  a stronger wave of dizziness hit and my legs suddenly became weak and gave out underneath me. I mentally rolled my eyes as I said hello to the all-to-well acquainted floor, and after doing a mental check to make sure I did not injure myself, I called for my mom to come and help me . She and my brother came to assist me, while my  legs were an equivalent to a jelly fish.  So the task of getting me from the front room to the bed took a little longer than expected.

After getting settled in bed, I had to rest until my blood pressure rose back to normal and wait until my legs decided to work again.  (After each collapsing episode it takes awhile for me to get up and move around because my legs can lose their function.)  However,  that dull pain in  my left side that I had been ignoring started to increase until it became extremely uncomfortable.  About an hour later, the pain was to the point of  where it became unbearable and I was nearly in tears. With the pain becoming worse in a short amount of time, and it starting to spread up into my chest, my mom rushed me over to the Memorial Hermann hospital ER.

The emergency room was incredibly busy so it took awhile until one of those ER rooms were available.   By then, I could barely sit up anymore due to all my symptoms, especially the pain, being off the chart. So when we got settled in the room and the doctor ordered some medication to bring me some relief from my pain,  I could have sworn the angels of Heaven themselves sang Hallelujah.

All of the blood work and testing went by in a blur, and afterwards we were waiting  for the results to come back. During that time, I started thinking over about my easygoing days and how much I enjoyed them while they lasted. If you rewind just a few months back, my usual symptoms and even some new ones started to spiral out of control.  It was frustrating because even though I have been on a series of medications that had been working for so long, that didn’t stop the cycles of intense symptoms.

Over the course of previous episodes, I went  through rounds and rounds of tests and I was always disappointed and sad when the results came back normal….and to some that may sound weird. Why am I disappointed because of that? Wouldn’t anyone be happy to have this so called good feedback? In my case, it is frustrating to get back “normal” results because that means that my team of doctors goes back to the drawing board on what is triggering these extreme episodes.

I know if I received an official co-existing diagnosis that resides along with my Dysautonomia, it would not make me all healthy again and solve everything. It would at least, though, be able to help my doctors to figure out another form of treatment  to help calm my out-of-control symptoms.  So when the ER doctor finally came in with the news that all the results were “normal”, I crumpled into tears as soon as he left. I want to know what is causing all of my pain, but what I want to know even more is to find out why I am abnormal and extreme in even the Dysautonomia world.

Before I go on, I want to say to those that read this that are suffering from Dysautonomia like I do, or from any other chronic illness; do not be discouraged from what I have written here.  Whenever I receive disappointing results or whenever I cry, it is never out of losing hope.  This just means that there is another obstacle to overcome, and over every obstacle is the other side, which hope lies.

Due to my  stubborn nature, I NEVER give up. I’ll never give up trying to fight through an obstacle. The hospital is my battlefield, Dysautonomia is my enemy. My tears are just a sign of my battle.  I don’t know what different things you are going through, all of our stories are different, but at the same time they are similar:  we are the “hidden” with invisible illnesses that can wreak havoc in our lives.  We are in this battle together.

I hope I can inspire you to never give up, to never stop fighting.  Always keep moving forward through your obstacles because eventually you will win and get to the other side. So I kept this mantra in mind when they sent me home and it brought me comfort.   However, I will not lie.  I was down for the rest of the week and had pity parties here and there, but I shook it off afterwards and kept on pushing forward.

The good news is that after days of resting, I have been slowly recovering and was even feeling strong enough to go see the outside world this past weekend. Right now, there is nothing else anyone can do at the moment until my main cardiologist returns from out of town. But until his return…..I will just have to take it easy and treat all my symptoms as needed and sing the good ole Hakuna Matata lyrics.

My Reason to Smile this week!  If you haven’t seen them yet, I’m happy to announce our new Mik’s Hidden Hearts t-shirts are now available, go check them out here! 🙂  For every one sold, one will be sent to a fellow hidden teen in a Hope Kit.

 Now for the Dys Song of the Day:  I always flip to this song on my ipod (which is practically attached to my ears 24\7) when I’m having a low day or in need of some empowerment . It gives me a reminder that God is still there and that He is watching over me.

Skillet- Whispers in the dark

No

You’ll never be alone

When darkness comes I’ll light the night with stars

Hear my whispers in the dark

No

You’ll never be alone

When darkness comes you know I’m never far

Hear my whispers in the dark

Whispers in the dark

Until next time – remember you are not Hidden!  Need to vent or chat?  You can email me at Mikaela@hiddenheartsalliance.org or go to our Facebook page.

Posted by Mik’s Momma Bear:

1.  Mik loves finding reasons to smile.  Below is something she found on Pinterest and loved : )  She thought this related to how people see chronically-ill people versus how they should see themselves.Image

(2)  Mik and I are so excited by all the new happenings with MHHA.    Mik is finishing up her latest blog post and it will be updated soon!  And, fyi, we have moved our main website to our permanent address at www.mikshiddenhearts.org.

(3)  And last, but certainly not least, after several rough days, and her superhero cardiologist Dr. Numan being out of town : ( , Mik’s favorite general doctor, Dr. Joshua Defriece, has said her pain on the left side of her ribs (towards the back) could possibly be Costochondritis.  Though it is very painful and feels like sharp stabbing pain in the afflicted area, the remedy is pain medication and rest, rest and more rest.  We are not sure 100% if this is exactly what is causing these painful episodes, but we are thankful that after several days of feeling miserable with every symptom in the book, she is feeling better.  Thank you all for your prayers!