We spent six and a half hours in the ER today with the word Meningitis being thrown around. I am still processing everything that happened . But I wanted to share a few of the posts from last year when Bodhi was in the hospital very very very sick. The kids seems to be sick non stop. I have questioned myself...beat myself up... wondered if I am creating it... Tonight as I talked to my trusted pediatrician and friend she healed a part of my heart that has been broken for a long time.
Me: "I just dont get it. I mean this poor kid what on earth am I doing wrong?'
Her: "Oh Meg, its not you...some kids just get sick with everything under the sun their first five years of life and then they are as healthy as can be."
Me: "You always say that when we are at this cross road. You said with RSV, Pneumonia (three times), Pertussis, and Kawasaki. The thing is I am really trying... I just...what the fuck am I missing."
Her: "You are not missing anything. I would tell you. I would also tell if I thought you were crazy but you are not. I have patients that are rainbows and they are in here ALL THE TIME for NOTHING. But our Bodhi...he just does it big. Man when this kids gets sick he gets REALLY sick. He scared the shit out of me and my entire staff today and that is NOT easy. When he was screaming and vomiting and telling us his head hurt, combined with is color and focus, DUDE. You and Tommy both processed it, you took in the info and helped him. The thing that was different is you already knew exactly what we were suspecting, just like always five steps ahead. So the min he was back in your arms YOU were moving his head. YOU were looking for mobility. YOU were focused on his eyes and YOU went to my nurse because you already knew. When I walked in that room and saw him balled up...well anyway you saw the tears...and YOU said meningitis? It was a statement with a sorta question mark because you already knew. "
Me: "I dont wanna know that stuff. I wanna be one of your parents that believes their kid as toddler on set migraines based on gluten intake or whatever the latest thing is. It fucks with my head. I barfed in your bathroom today...I cant handle it. I did not see meningits I saw death. I saw a list of all the blogs I read and all the mamas I "know" that have lost their babies and I was calculating. Doing statistics in my head. How many blogs with this? How many with that? What are the odds here? What are the odds there? Did I create that today????"
Her: "If that had been either of my kids you would have seen a side of me you never want to see. You and Tommy??? Even with all you are going through you both scoop him up, remind me to call ahead and tell me to stay calm and you will call me soon. No arguing or blaming. No fighting. Just two parents concerned for their son. That is a good mama."
Me: "I feel like an epic fail."
Her: "Feel away but your not. "
Me: "My parents just got in today at 12." (they arrived the day Bodhi got sick last year)
Her: "Oh boy I am sure this is gonna provide a few good stories in the days to come."
Me: "I just...Why do I feel 14."
Her: "Because parents do that to their kids (big laugh) If they have any questions tell them to call me."
Me: "Lets grab a drink soon."
Her: "DONE. Ill see you at 815am for labs. If ANYTHING comes up call me tonight."
Today I was reminded of another beautiful gift Nevaeh gave her brother... the gift of a mama that knows how the medical world works, does not get messed with, could give rats bum what your degree is in, advocates for her children like no other, corrects misdiagnosis, calls a brotha out for prematurely running expensive tests before running less invasive cost effective ones, all while being respectful and keeping my cool with a pretty smile . (I think I also gave them a business plan on how to maximize their rooms, cut down on wait times and improve patient satisfaction...not bad for 6.5 hours)
So many of you are either pregnant with your rainbows or trying to become pregnant. I wanted to share these thoughts with you because I wish someone had shared them with me. In my "real" life I know very few people that have lost a child. It has been extremely difficult to walk this path with our rainbow and the many medical challenges he has faced. I have had medical professionals say the worst things and allowed them to define me. I have had friends and family question me. I have lost my cool and gave away my power. There are things in life we have control of and things we don't. I cant define all of them but I do know for me I always have control over how I react. I am choosing to react from a space of growth today.
The following posts are from last year (from a blog very few if any of you read) when Bodhi fell gravely ill with a crazy infection. It took almost a week of nonstop advocacy before he was treated...sadly he was extremely sick before he got the help he needed. I knew he was sick. I knew it was bad. But I let other people tell me I was wrong. I backed down and to this day I have not forgiven myself for all he went through as a result. I will NEVER EVER do that again. Read if it feels right...its okay if it doesn't....tomorrow or sometime soon I will write about today. But know that B is good. He does not have Meningitis...just a touch of something that is making him feel like crap.
Ps. I am wayyyyyyyyyyyyyy to tired to edit anything hope you understand. :)
Repeat Mantra March 2010
Is this my world?? Am I dreaming?? Have I always had so much fear?? Good God did we check everything twice before we signed Her DNR??
Bodhi is sick. He has been for a week. His temperature is over 100. He has a rash. His hands and feet are full of blisters. He has strawberry tongue. There are sores all over his mouth. He is pale. He has barely touched food. He went almost 36 hours without a wet diaper.
I was in New Orleans for work. Tommy called. I came home early. They met me at the airport. I gave Bodhi a hug. He felt warm. We got home. Pulled up the driveway. I went in the house first. Tommy got B out of the car. I took off my shoes. I turned around and he handed B to me. My eyes jumped out of my head. “Tommy has he been this puffy for long?” “How high is his temp?” “When did he last pee?” “Has he had anything to eat or drink?” “How much has he been sleeping?” “What is all over his mouth?” “Why didnt you call the dr?” Tommy stares at me.
I stop. Take a deep breath. I repeat my mantra “This is a healthy baby. He is strong. His lungs are fine. His heart is strong. He can get sick. This is a healthy baby.” Tommy is still staring. I snap out of it. I grab his hand. “Im sorry. Your doing great. He is fine.” Im gonna run upstairs.
Call one. M. She understands. I can call her with anything. She has walked this road. She will not think I am crazy. Phone is ringing…Repeat…. mantra. She answers…she always answers..thank God. Run through the list. She says what I am thinking..fever rash..take him in. K.
Tommy comes up stairs Bodhi is in his arm. I look at him again. He is breathing but I see a version of him dead. STOP. Repeat mantra..get in bed. Cuddle. Lay like family in book. REPEAT MANTRA….. he is breathing hard…his body is hot and rash is spreading. Page Dr. on call…Bodhi cannot die tonight. What would I do… Dr is paged. Bodhi is laying next to me. He is puffy..red..hot…dr is not calling back….REPEAT MANTRA
Call K..she was Nevy’s nurse. She knows everything. She will tell me to calm down. She will repeat mantra to me. Phone rings..REPEAT MANTRA….no answer leave message…She calls back while I am leaving message I click over..she doesnt know peds….she knows NICU. She is calm..She knew Everything for Nevy. EVERYTHING. She allowed me to parent her…she tells me to parent Bodhi. I am listening… She is calm…she listens.. I am panicked and she can tell…I am thinking she is thinking I am crazy… She is not…she is just listening…on call nurse beeps n while I am talking to K.. I click over
Is it not my doc/nurse…it is a new nurse…she doesn’t know about Nevy. She doesn’t know me. She is gonna think I am crazy. REPEAT MANTRA….calm down tell her the symptoms. The other part of me kicks in… the part I did not go to school for…the part I just know.. the part I do not want to know…
“He is tachy (high heart rate), we are alternating motrin and tylenol q4h and temp is still 102+ last diaper was at 2100 Thursday.. he has a rash it that flares with fever..his hands and feet feel and look like they are full of blisters…REPEAT MANTRA..STAY CALM… …fever is not coming down. He is drooling.. mouth is swollen..tongue is bright red..with dots..retaining water..” Then she says what they always say…”are you a nurse?” “No I am not… I wish I was but I am not. I am just a mama that had a sick baby.” Silence on the other end… REPEAT MANTRA…”Meghan you need to bring him in now.”
Load up into the car. I cant bring myself to put him in car seat. What if these are the last precious minutes I have with him? Tommy drives..REPEAT MANTRA… we pull up to the same hospital Nevy died at…repeat mantra…repeat mantra…walking in her surgeon walks past me..he doesn’t remember me… I am holding my son.. my precious son…the surgeon did three surgeries on my daughter but he doesn’t remember me…REPEAT MANTRA…Please God not tonight.. okay…Ill do anything.. REPEAT MANTRA…
This has been going on now for six days. Today they they tell me there is a problem. Blood work is bad. REPEAT MANTRA. Tomorrow we meet with specialist… It is just a fever and rash right?? It cant be more..Can it??
Repeat mantra: “This is a healthy baby. He is strong. His lungs are fine. His heart is strong. He can get sick. This is a healthy baby.”
No Routines March 2010
Are you here with me tonight sweet girl? Are you watching over your brother?? Can you feel my fear?? I feel like I am reliving something…yet at the same time it is new. I know Bodhi is a healthy baby. I know that his body can process the toxins that are currently running through him…but I cant slow down. I cant stop wondering if you are here. They admitted us at 6pm tonight. I am glad we are not at your hospital. Its strange but that is how I think of it. Your hospital…your home…our home.
Everything with your life was a routine. I pumped milk every 3.5 hours around the clock for five months. I labeled your milk for storage and cleaned the parts to my pump. I drove the same way to and from the hospital every single day. I parked in the same lot. I walked through the same door. I took the same elevator. I washed my hands at the same sink. I walked in set my things down. I read your current chart notes for the day and reviewed any questions or concerns I was having with your nurse or doctor. And then the best part of my routine…I held you. When you couldn’t tolerate being held I sat next to you. Fixated for hours. It was all routine.
Something in me knew I could not go back to your home for this. I needed it to be different. I do not want a routine. I like not running into people I know. I like not running into people I remember but do not remember me. I like the way the parking is confusing. I like the way the elevator is different as well as the cafeteria. I like that we have a room that has a door that I can close. I like that daddy is laying in bed with Bodhi right now. I like that the sink is in the room. But the soap..the soap is the same. The smell is strong… I remember you. The soap is routine.
 |
| Snuggled |
They tell me Bodhi needs a routine Echo (The dr called me at home to tell me andI threw up)…. I dont want routine. The last routine echo I watched was yours. The guy that administered it looked me in the eyes, smiled, and said you looked perfect. It was routine. Now I understand why it is routine for a technician to never talk about what they see. I will always wonder if he truly believed it was perfect. I cant imagine so due to the severity of your diagnosis. Maybe he wanted to give me one last piece of happiness. Maybe he knew our world was about to change forever and he wanted me to go home and get some sleep. Maybe he was looking out for me. I wont be in the room tomorrow for the routine… I cant.
Sir Bodhs is gonna be fine. I hope you are here…..
 |
| His poor little mouth... |
 |
| The skin is coming off his hands and feet which can be a source of infection :( |
Normal??? March 2010
People like to say there is no such thing as normal. It seems to me that normal is definable on a person by person basis. I believe the life we live and the experiences we have create the lens through which we view the world. This lens is unique to each eye. I may look through and see something and believe it to be normal and you make look through the very same lens and think that it is abnormal.
I have no idea what it is like to parent a child when you have not experienced losing one. I wonder if there is more freedom. I wonder if there is less fear. I wonder if they laugh more and cry less. I wonder if those lucky parents know how lucky they are. I know how lucky they are. I also know how lucky I am to have a beautiful healthy son whose entire body works exactly the way it was designed to.
However, when he gets sick my mind goes a million miles a minute. I have a hard time differentiating between a common cold and death. It sounds so dramatic…it IS dramatic..and it is so true.
These last 48 hours have been intense. I knew at some point Bodhi was going to need an Echo. I knew that they would come to the room to do it. I knew that they would bring the equipment with them. I knew that the technician would explain the procedure just like the dr had. I knew that I was scared. I mentioned to our nurse that I would like to be notified before they came. She assured me she would make sure that I did not miss the procedure. I swallowed my anxiety, looked right at her and told her I wanted to miss it.
Insert her lens and insert my lens.
I am active in my sons care I dont know how NOT to be. I understand a vast majority of ”general” pediatric medical jargon. I have read his chart. I looked at his labs. I have held him when they draw blood or start IV’s. I have told him exactly what is going on. I prepped him if something was going to hurt and I assured him when it wouldn’t. I was present when the pediatric team did their rounds and again when the infectious disease team did theirs. I corrected the drs when they presented inaccurate information regarding Bodhi. I have researched the words they used that I didnt understand and asked questions to be sure I understood.
We have been lucky enough to have the same day nurse since admission. She has asked me several times if I am sure I am not a nurse. (I mentioned before I get asked this whenever we are in medical settings and Bodhi is sick) I told her the same thing I have tell everyone. I am not a nurse. I am not a medical professional in anyway. I gently broke the news that our daughter was born premature and fought five hard months for her life. I explained that the day she was born I was not afforded the luxury of only becoming just a first time mama that to one degree or another I also became a nurse, doctor, surgeon, radiologist, respiratory therapist, phlebotomist, case manager, social worker and an advocate. No formal training needed just tell a mama her baby is sick and you will be amazed at what she can accomplish.
From her lense it seemed crazy that a simple procedure like an EKG would freak me out. I had been so active. Why now? Why was this to much? Why was I acting so abnormal? But my lens has a scratch, it is right in the middle and I cannot see out. My lens tells me if Bodhi gets an echo he is going to die. My lens tells me that if that machine comes into his room…ugh!!
The technician and machine arrived a hour early. I looked up and they were at the door. Another nurse came in. I thought to myself I can do this. I can change my lens. I can take a new picture and define a new normal. She was handing Bodhi stickers and raising his bed. She was talking about the TV. She told us he was cute. I looked at Tommy and he knew. I had to get out. I needed to breathe and I needed to get away from that machine. I called M she would understand. Ugh I abandoned my son because of fear. Yes his daddy was with him but his mama was not. I talked to M until they told me it was over. I walked back in the room. Tommy was smiling. Everything went just fine and guess what he said next…”babe she told me off the record everything looks perfect.” My eyes welled up and I looked at Bodhi. Shitbox. I have heard that before.
Normal. I have mine and you have yours. To me that means there is such a thing even if our definitions are different.
 |
| So tired but such a good boy... so proud of him... and so sad for him |
A Place of Love and Fear March 2010
We were finally discharged from the hospital on Sunday morning. Bodhi has been slowly feeling better each day. Some of his symptoms are worse, others are better and a few are new. The dr. says that it will be 6-8 weeks before he is feeling completely like himself again. How do you explain that to a two and a half year old?
He has been amazing through the whole process. I remember watching Nevy go through excruciating procedures and quietly thanking God that she had no words to express herself…the tears said it all. Our lil man has the words. It makes me ill to think of Friday night as he became sick from the medication..the way he screamed out to us to make it stop. The crying….the mama please…the daddy now… my heart broke for him….Please let me take his place…please take away his pain…please make this stop… please please please….
The journey of motherhood has been the most amazing, rewarding, challenging, happiest, saddest, natural thing I have ever done. I never looked at Nevy and thought about her life different then the life she had. I didnt have time to think what if this or what if that. She was given challenges from her first breath and it was my job to work with her to overcome them. Right up to her last breath I believed with my entire heart that she would turn a corner. That she would defeat the odds. That she would become a different 1% the then fate that actually took her.
It is a delicate balance to accept what is happening and believing it can be different. I know I was present in my daughters life and death. I brought her into this world, I sat with her, fought for her, studied and learned for her but mostly, I prayed for her… I prayed that whatever was best for HER would happen. I hoped God knew that translation included giving her to me. Granting me the privilege to watch her grow. Letting me keep her forever.
I said the prayers while I signed her DNR. I said the prayers while they discontinued the medication that was saving her. I said the prayers as each day came and went the final week of her life. I secretly held vigil in my heart that our baby would beat the odds. Amazingly on the morning of her death, as she lay dying in my arms, I knew that she had beaten her odds. She gave us five months. She fought a good fight and she won. It was those of us left behind that felt we lost.
Both times motherhood has taken me to a a hospital I left feeling worse about being a mom then I went in. How on earth did B get Kawasaki’s? What the heck is it? What am I doing wrong as a mom? Most kids never see the inside of a hospital but both of mine have. What is the lesson I am missing the brings me back to a place of so much pain and fear.
These past two weeks I said the same prayers for Bodhi. Please watch over our boy. Please do what is right for HIM. But I also pleaded in a way I have never pleaded before… PLEASE PLEASE PLEASE do not take our boy. Please trust me with him. Please let us watch him grow. Please give him health….
Bodhi is a healthy boy. He is gentle and loving. His smile and laughter are infectious. His dance is different then most. And while I do my best to protect him from my own fears I wonder how long it will be before he understands all that came before him and the mama I am today a result.
