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!)
Mik's Hidden Hearts Alliance for Dysautonomia 