Do you believe in Miracles?

If you practice Buddhism, Christianity, Judaism, Atheism or a higher power I think everyone is entitled to practice or not practice whatever gets them through living a rich and fulfilled life. Regardless of my practice, I believe that everything good and bad happens for a reason.  I may not know the reason for what happens when I am going through it and that’s ok. I also know there have been challenging times when I really don’t give a crap about reasons. It just plain sucks.  One of those sucky times was when Meghann had her first stroke at 5 years old.

It was a devastating time for her and  me. There are not too many things in this world that can drive a mother into a total frenzy than to watch a child suffer. It is even more distressing when it is your own child. Unfortunately, most of us know ( if you are a parent or not) what it is like to watch someone you love  suffer through an illness. I had a  sick feeling in the pit of my stomach when Meghann first became sick. It was as if I knew that something bad was around the corner. Call it mother’s intuition or psychic power. Whatever it was I knew the storm was about to explode.  Even though it was Meg that endured the  countless needle sticks, poking and  prodding, I felt every pinch and stick like I was her voodoo doll.  I helplessly stood by and watched Meghann suffer a stroke and felt powerless to control anything that was happening.  I watched as she lay in the hospital bed as her little arms grew twice in size from swelling of IV’s.  I was left on my own to collect information to make decisions for Meghann’s care. I consulted with many doctors over the course of this stroke in the hospital. There was no internet to help me out with my decisions of medical care. I had to rely on my own questions and prayed the doctors would explain it in a sensible manner that made sense to me.  I had no time to fall apart. I had to be strong for Meghann. There were too many people around me falling apart with negative talk. Of course, I had  the one with the constant ignorant comments. ( story in previous blog)  I refused to listen or pay attention to the crying around me. I would quietly wander away from people visiting and head to the cafeteria.  One day,  I slipped away from the people who showed up to “support me”  I headed to the cafeteria to get coffee and the clerk asked me for my employee ID. That is about the time when I thought to myself  Meghann needs to wake up NOW. It is time for our miracle. I had an instant rush of hope while I  marched back to the ICU with a rejuvenated mindset. I had confidence in Meghann’s ability to fight her way back to me. After all, she had the blood of my family running through her veins.

Meghann was born with Cerebral Palsy and she was able to respond to yes/no questions. She sat up without assistance and was able to feed herself. She recognized the people she was close to and attempt to verbally speak names. She said mommy, V (for my sister),  she could pronounce my brothers name and had nicknames for her grandma and great-grandmother.  One more name she could pronounce very clearly was Abby. I have a best friend who has a daughter Abby that Meghann adored. She would constantly ask for Abby. She would giggle and do whatever Abby asked her to do when they played together.  Abby was a great help to Meghann when it was time for Meg to learn her letters and numbers. Abby would sit on the floor with Meghann and they would play school. I believe it was their bond that helped Meghann succeed in school.

The day that I had decided we were ready for our miracle the doctor entered Meghann’s ICU cubicle with a grim look on his face. The latest test results were in his hand. He started with the bad news instantly.

Meghann would not be able to sit up, establish eye contact, and probably never say anything. She wouldn't even recognize me. They told me she would need to continue life with a feeding tube. He continued to inform me how the nurse would be in to show me the process of caring for a feeding tube.  As the person sitting beside me began to blubber again………I have admit that my brain was in the process of shutting down and they both continued on without me listening.

When the doctor was finished I slowly stood up and headed down the hall by myself to see my girl. I had spent so many nights in the hospital. I had lost track of time. I had no idea what day it was when I walked back into the pediatric ICU. I looked around at all of the cards, gifts and flowers. There were Mickey Mouse balloons with Get Well written across them and food that had been sent to us. We were very blessed to have a supportive family. We also had community full of people who cared and supported Meghann through her time in the ICU. I picked up the homemade chocolate chips cookie bag that a friend has sent to the hospital. These cookies were Meg’s and my favorite. I opened them as I glanced at Meghann and her eyes opened. I was shocked. I called the nurse as Meg instantly started to struggle to sit up. She was wobbling back and forth.  She had been laying in bed for weeks and her muscles were weak. She couldn’t get her balance but continued to struggle to sit up. I helped her up. I was afraid to let go. They doctors words kept repeating in my head. She will never be able to do anything that she did previously to the hospital stay.  Meghann looked up at me with her big brown eyes but never attempted to say anything.  I think she recognized me. Was this pediatric neurological doctor wrong?    Meghann reached for a cookie. The nurse nodded to go ahead and give her one. She ate it in almost one bite. She was starving. She reached for another. I could believe it. Meghann was awake. I was laughing and crying at the same time. She grabbed for the cookies. She wanted more. She looked straight into my eyes and said “Abby”  I couldn’t believe it. She didn’t say mommy and I didn’t care. She said Abby. . I knew if she remembered Abby then she was back !!!  I got my miracle that day.

Before we left the hospital  Meghann was sitting  unassisted and  she was talking.They removed the IV’s and  pulled the feeding tube out. We left the hospital with nothing more than what we arrived with several weeks prior. Do I believe in miracles? Absolutely !!!

Dr. Phil says "Get Real."

Meghann had a stroke. I had no idea at the time that children had strokes. I only thought that grandma’s and grandpa’s had strokes. Boy was I naive and ignorant.  Dr. Phil says “get real.” I got real extremely fast.  I was also about to receive a crash course about children who have strokes. I certainly did not care to take this course but here I was listening to the explanations of the doctor. Although I felt like everything up to this point had happen quickly it seem to be moving in slow motion as the doctor talked to me.  I remember watching the doctor's mouth move and I didn’t understand the words coming out of his mouth. I felt like I was listening to Charlie Brown’s teacher Wah Wah Wah Wah.

He used words like induced coma, cerebrovascular neurologist, vascular neurosurgeons, magnetic resonance imaging, paralysis, brain swelling, brain damage, memory loss and  etc. The list went on and on with technical terms that I had no idea how to pronounce. I tried to concentrate on what the doctor was telling me but I was having a difficult time comprehending everything. Not only did I need a medical degree, I was functioning on very little sleep.  I had spent a week prior to this day with a sick child and never stopped working. I went from one hospital stay to the larger one with the same clothes on my back. I had not had a restful night sleep in weeks. I was running on adrenaline and coffee.  

The doctors informed me that Meghann may lose the little motor function that she had before the stroke. I was optimistic and crushed at the thought of Meghann waking up to another set of challenges. It wasn’t fair. She had been through so much already in her short life.   Meghann was diagnosed with Cerebral Palsy when she was around 10 months old. She was nonverbal and considered nonambulatory.  She was in an early intervention class soon after her diagnosis. She worked very hard to get where she was before this stroke. She attended Easter Seals several days a week for Physical, Speech and Occupational therapy. I worked with her almost constantly. She was making such great developmental strides and now she would have to start all over.  I had confidence in Meghann that she would beat the odds and wake up. As the days went by  new tests were added daily. She didn’t seem to be responding to anything. She wasn’t even responding to pain. At first I thought not responding to pain was a good thing until I was informed that it was not good. Responding to pain is a sign that the patient is healing. It would of been great to have the internet back then to look up all this information. Well maybe not. It might of made things worse.

I  had a nurse tell me that the internet was a great thing however it could be a real challenge with people reading too much information. I always thought knowledge was power until I had this conversation with a nurse. I guess sometimes too much knowledge can be a scarey thing and perhaps self diagnosing is not the right avenue to take for yourself.

The weeks went by and the pediatric ICU doctor was there at all hours of the day and night. He had 3 other children at the time in the ICU who had suffered strokes. All of them close to Meghann’s age ( 5 years old). It was hard to stay positive when there was so much suffering going around you every day. I would sit by Meg’s bed for hours and watch her. All of the sounds of the steady beeping was enough to drive me insane. I wanted to rip all of those tubes out of her to make that  irritating beeping stop and run away with her in my arms.  I wanted to go back in time. I wanted to make her better. I wanted her to wake up and smile at me and say “mommy.”

Blah..Blah..Blah..Blah

I originally decided to start my blog from the beginning of Meghann’s life. I wanted to explain the journey that she and I had been on together.  However when April 1st appeared on the calendar  I  changed my mind.

 While Meghann was in the hospital for several weeks we welcomed 2 babies into the  family. My sister-in-laws both gave birth to healthy baby girls. They were born a few days apart. Whenever my nieces birthdays approach I am always reminded of Meghann’s first stroke. I am also reminded of the reality that life goes on with or without us.

“ Everyone at work is so happy for me that I had two granddaughters born the same week”.

 Blah…. blah…. blah... blah.

This is the statement that was first said to me while my daughter lay in the intensive care unit in a medical coma. Yes, it is hard to believe that someone could be so ignorant to say such a self-absorbed thing to me. I understand that in the time of crisis some people do not know what to say or what not to say. With that being said this was not the case in this situation.

( There is one fact that I would like to mention.. Pick your words carefully and be mindful of others feelings.)

I will never forget how this person went on and on about the 2 babies to me. I remember how my sister looked and me in disbelief.  She was just as amazed as I was that the individual wouldn’t shut up. It didn’t take long for my sister and I to walk away toward the elevators.  We got in the elevator without saying a word to each other. We didn’t have to say anything. We both knew what was going through our minds. Sure, I was happy that my sister-in-laws had healthy babies but did I really need to listen to this woman carry on about. No I didn’t. You would think that when my sister and I got up and left that this would of stopped her. No it did not stop her mouth. As soon as we walked back in she  started the bragging of her grandbabies all over again. This time it didn’t take my sister very long to put an end to the chatter mouth. I am trying to keep my blog clean so I won’t repeat anything my sister had said to this woman. Let me just say that the bragging stopped. It is strange how recalling a situation can bring up all of those old feelings.

I am going to take a breath and continue this blog later.

I want to share in my next blog the miracle that happen after Meghann extended stay in the intensive care unit.

By the way....Happy Birthday Lauren and CC

I Dream of Jeannie

       The rescue unit alarm blew louder today and it wasn’t because I lived across the street from the siren.   I had heard this whistle go off many times over the years. I am guilty for giving it little thought during those years. I grew up in a small Midwest town where we were lucky to have  a volunteer fire and rescue unit. I never dreamed that I might need those volunteers someday. On this particular day, the siren was louder to me because I had been the one to dial 911.

      Thelma appeared like Jeannie on  I dream of Jeannie.  One minute I was alone in my living room with Meghann having grand mal seizure and the next minute Thelma was there. I don’t remember answering the door. At this point, she could of climbed through the window. I didn’t care.  I was grateful to see her show up to help Meghann. Thelma was a nurse and volunteer on the rescue unit and I had known her for many years.

       When the ambulance arrived at my house Meghann’s seizure had stopped. She wasn’t responsive at this time so they quickly  loaded her little limp body into the ambulance. I sat next to her  while Thelma took Meghanns vitals and did all she could at this point.  It was about a 20 minute ride to the local hospital. It seem to be taking more like 20 hours. I felt like everything was going in slow motion and I was helpless to do anything for Meghann. I was suppose to take care of her and I felt that I had failed. She was only 5 years old. How was any of this possible?

I know now, the one thing that I did  wrong was that I had  let my gut instinct be overridden by the expertise of the pediatrician the day before. My gut instinct is something that after this ambulance ride I have always listen to when it came to Meghann’s care. It has paid off in insurmountable ways over the years.   

       The red lights were flashing and the siren was blaring  we made it to the hospital in record time. To this day, when I hear sirens I have a sick feeling in the pit of my stomach with memories of Meghann’s first ride in an ambulance.

      Meghann spent 3 days in the local hospital until she started to have internal bleeding. The general practice doctor decided she needed to be transferred to a children’s hospital. It was a good move and I was glad to agree with the doctor. However hindsight tells me she should of been transferred the day we arrived at the local hospital.  Unfortunately, sometimes it is hard to make those decisions when you're in the moment.  At 9 o’clock at night my little girl was loaded into an ambulance with her IV’s still attached  and we left the local hospital.  I sat quietly   in the ambulance beside her and we headed to Rockford Illinois. I am not sure what time we arrived at the hospital but it was late. I was going on very little sleep. Meghann had been sick for a week before all of this started. I know when we arrived at this big hospital the staff went right to work on Meghann. The phlebotomist took several  vials of blood out of Meghann’s arm.  They started to schedule tests to be done immediately. I followed her to each department while they did a MRI,  EKG and etc.  By the time the sun was coming up Meghann was settled into the intensive care unit. She had a tube in her nose, several IV drips that seem to be keeping  tune with the heart monitor beeping. She was resting peacefully as if nothing was wrong however I knew better. Meghann was in an induced coma. She would be in this coma for several weeks. Finally, the next morning after being up all night the doctor came in with some results. He escorted me to his office.

       We sat down and he looked at me and said “ Meghann had a stroke.” stared at him speechless. I thought to myself he is nuts. Kids do not have strokes or do they?

http://www.strokeassociation.org/STROKEORG/AboutStroke/StrokeInChildren/Stroke-In-Children_UCM_308543_SubHomeP