What the Heck Happened?

I don't even know where to start with this one. (I want to get this written before Pip comes home tomorrow because I am going to snuggle his face until he is sick of me.) It all happened so fast.  December 30, 2016 at 11:40 pm while finishing up my wineglass for the next day's festivities, I got very nauseous and very cold.   I sealed my glass and took a hot bath. I hoped to crap I wasn't sick for the next day as it was my niece's first birthday and I waited the whole year to celebrate.
The next day, New Year's Eve, I felt like utter garbage but THOUGHT I was getting better as the day went on.  I even thought that, perhaps, I'd make it to my niece's celebration after all.

Then Lennon was a party pooper and came home because he wanted to be with me.  I, despite my best efforts, couldn't eat, and started to feel ill again by 10 pm. Then I noticed I had an unusually difficult time breathing.  Nothing I was concerned about, I just noticed that I had to focus on catching my breath.  Then I couldn't take a deep breath. Then I couldn't hold my head up.

To be fair. I haven't been this bad since I was six. Although I'm not old enough to say this, that was almost 26 years ago- hypothetically, if I was that old.

Lennon was up by the time the ball dropped, which I was grateful for because I had a feeling I was headed to the hospital, I just didn't think by an $1100 ambulance ride nor did I think I would spiral so quickly and be virtually unconscious within two hours.

Shortly after midnight, I told, more like gasped, to Dann that he had to calmly call my mom and call 911.  Jacob answered my mom's phone and although he did what he was told, which was to get my mom, we got disconnected.  I couldn't wait for that to get sorted out so Dann called 911 and that's when things get cloudy.

The EMTs came in and simply couldn't freaking grasp that I had an undiagnosed medical condition, which apparently became a trend in the coming days. My brother got here shortly after the EMTs did and tried to explain to them what my story was but they didn't want to listen.  Literally all but kicked him out instead of listening, and with me, I'm not in a textbook; you're not going to find journal articles on me. You're not going to meet other people like me.  What my family says, what I say, is the most truth and diagnosis you're going to get. These two could not wrap their heads around that. Before you think anything, I have the utmost respect for people in the medical field, but these two EMTs were not what I needed, although they did get me to the hospital.  I remember wanting to lie back down on my bed and they couldn't let me (because apparently it's easier to breathe sitting up?) and then just leaning on Dann because I couldn't hold my head or my body up.
I looked at my brother and I can remember him saying she needs oxygen, and that's probably the last thing I remember besides him carrying me out on the stretcher with the other EMT and asking me if I wanted to go to CMC.

The ambulance ride was long and difficult. I couldn't breathe even with the oxygen and it was not getting better. I can remember hearing my mom's voice when I got to the ER. She asked if she could come in. Thank the good Lord that she did because she virtually saved my life.  It was still hard to breathe, obviously, but I had myself convinced that it was all good because I was at the hospital.  My God was I so wrong.  It must have taken longer than I remember it because apparently my dad brought my mom's car down and my mom took him back home before any real thing went down.  Before she left, she told the doctor to get a ventilator ready or a crash cart as this wasn't her first time in the rodeo. BUT she made it back by the time I would need them.

They came in to take blood.  For those of you who followed my pregnancy and delivery story with Lennon, you may remember that my veins are terrible and I am next to impossible to get blood from.  Lady EMT tried but she couldn't. So a gentleman named Joe took my blood. He told me that my veins were a bit crooked but they're alright, and I laughed with him and said ha, that's what they say about me in general.  My mom was back by then.  I laughed at my own joke about being crooked.  I don't know if she did.  As I said this wasn't her first time at the rodeo and I guess she knew where this was going.  She suggested that they get a crash cart ready and to intubate me.

I can remember her asking me if I had Dr. Kelley's information in my phone.  But I got cocky after I survived the pregnancy and I didn't have it.  Shame on me. I was able to tell Dann how to search for his information on my phone which lead him to a huge information packet with my doctor's phone numbers.  It took quite a while to hunt him down.  But I'll save that for later.

Then they came in to test my gas levels in my blood.  Did you know that was a thing? I didn't. They take little picks, almost like a finger prick for a sugar test, but at your wrist. And I guess they test the gasses that way. I can remember asking my mom if they did this when I was a baby and she said yes. I told her my entire life I wondered what those odd scars were about, seriously all my scars could be explained but these tiny little dots on my wrist, and that night I finally figured it out - and probably gained some more.

This is where is gets really blippy. Snippets, if you will. The guy who was testing for gasses had to go to my other wrist. Apparently, I told my husband and the nurse that I couldn't breathe for real and that's when my mom said that I must be intubated.  I wish this doctor was the guy with me the whole time because he refused her apology and thanked her because she knows my case better than he does.  I'm going to find out his name and thank him.

Then I guess that's where the fun began. I was on a sedative while on a ventilator, but that didn't mean I was out of it.  I was awake for five to ten minutes at a time and I was able to write and eye roll to communicate. The medicine causes amnesia, so basically, I have snapshots of moments. I want to share them so get ready to laugh and cry and maybe even restore some faith in humanity and whatever god you believe in.

NANA -
My nana was with me the entire time.  I never saw her but I felt her.  At the very beginning, I went to her bar like I did every Friday night.  She wouldn't have me. I walked up the steps like I used to and there was a note taped to the door (she was famous for that.) In her beautiful handwriting she wrote, "Not Ready Yet. Go Back to Mom's. Love, Nana."  It was even in gold. Now, I don't know much about what happens when we leave this earth. I can tell you  that I don't think we are just done. I can also tell you that when I was getting CPR on her bar when I was a child, I 100% saw my Gram Chmil, my great-grandma, and a childlike figure, who as I got older, learned was more than likely my father's oldest son. But I don't know. Anyway,  I think that perhaps my nana thought that if I saw her that I wouldn't want to leave her - and at that point I probably wouldn't want to leave her and so I simply wouldn't. I don't think I'd be able to figure "it"  out.  After that, maybe I woke up for a few minutes.  But she was with me the whole time.  I spent a few more minutes/hours/days, I don't know, trying to find her.  There was a point that I was in the bar, with the only grandpa that I've ever known, Billy, but Nana wouldn't see me. If Billy said anything to me, I don't remember.  We were just sitting in our usual spots in a very full bar, too full to see Nana.  Then, maybe as I got stronger, I stopped wanting to see Nana.  I avoided her once because I thought if I saw her, I'd  never see my Lennon again and I knew enough that that wasn't what I wanted.  So after that she played me the most beautiful picture shows - old fashion and shades of brown. She never left me. Not once. She was my serenity. She was my company. She was my guide as long as I needed her.  I spent all of 2016 chasing memories of my nana and we picked up right where we left off. I'm sad that she is gone, but I am glad that I wasn't alone.

A Mother's Love
If you asked me if my mom ever left me while I was out of it, I will tell you no.  When I try to remember awake moments there is no time that my mom is not there.  And she is glowing and beautiful.  Warm.  I knew she was fighting for me with those doctors.  I can remember her coming and telling me she got a hold of Kelley. I can remember her asking about my blood pressure and feeling so badly that she couldn't untie my hands as it was protocol for patients to have restraints with a ventilator in.  But for someone in a wheelchair to not have their hands - it's just the worst - and she knows that.  Then my mother took Lennon and kept him with her every night and took care of him.  I cannot express my gratitude enough.  To know he was safe and somewhere familiar was all I needed.  Apparently, the fight got real with those doctors and my mom and she expressed that she was going to get me transferred if they didn't start listening to her and my Dr. Kelley. Ah, Dr. Kelley.  He's known me for say thirty years. I don't think we ever actually met his wife because why would we? So my mom hunts down Dr. Kelley to his home office number.  Mrs. Kelley picks up the phone and my mother explains who she is. Mrs. K says that she will get a hold of Dr. and he will be right in touch.  My mom said, "thank you. I'm pulling at straws here."  And, maybe just what my mom needed to hear, Mrs. K says, "you keep pulling, dear."   It sounds so insignificant, but I suspect it may have been just what my mom needed to hear.

Then there's this mother's love.
I cannot describe the motivation, the drive, the fire, the fight that being a mom gives you. Every day you get shit done that you thought you couldn't do.  Every day you make it.  I hope that you never find yourself in my situation, so let me tell you this: When you are threatened with the reality of missing out on watching the person you love the most on this earth grow - When you are threatened with that handsome boy losing his mama, you fucking battle. And that is what I did. There was a point, who knows which time they had me intubated, that I thought I was going to die. I remember vividly trying to tell Dann not to take Lennon to England right away, not to take him away from his cousins and everyone he knows so soon after losing his mom. And no one understood what I was trying to say. I fell back to sleep being heartbroken for my little man who was going to lose his mom and all of the people he knows in a heartbeat.  That was just what I needed. That little boy flooded my heart and my dreams.  I am alive today because I didn't want him to not have his mother.  If it wasn't for him, I think I would have given up.  I was so tired.  I was intubated three times. But I had to get back to Pip.  Love drives this earth.  Through thick and thin.  Love does and don't ever think otherwise.

About Love -
You all love the shit out of me and I love you back.   When I woke up - oh my lanta - I simply couldn't believe all of the posts and prayers and messages. The visitors. The family and friends who would sit and hold my hand whether or not I knew you were there, I felt you.  I cannot thank you enough for holding my hand because I was so fucking scared and so alone.  Falling down a rabbit hole into an abyss. My brother and sister-in-law who took Lennon every day so my mom could have some sanity. My sister and brother-in-law for doing the same. My sister and my friend, Krissy, for hanging out with Lennon.  You all have left me speechless and full of gratitude.  I am moved to tears - quite literally - as I write this.  You love Lennon as much as you love me. Thank you.    My friend, Stefanie, was there probably all but two days. When I didn't even know she was there, she sat there. For my girl Michelle, who I met ten years ago when I went into a salon to get my eyebrows done.  She made that trip up to CMC to do my hair. It made me feel almost human again. All those visitors and gifts. My god.  Thank you.  For your prayers and your juju and your healing thoughts, thank you from the bottom of my humbled heart, thank you.

This British Guy Who Has My Heart -
So you may not know this but I know Dann because he would come and get rid of spiders in my flat in Liverpool.  He was the boy next door. Never did I think that he would be the guy battling alongside my mom to ensure my survival. He didn't not leave me except to shower. He held my hand. He sang to me every night except for the last night because he actually sang himself to sleep. He suctioned my mouth.   He fed me. He wiped my tears away when I cried that I'd never go home. He made me laugh. He didn't leave the room when they were pulling the feeding tube out and I was being a baby.  He's spent more time on the phone with Dr. Kelley than I ever have.  He told people to shut up when they were talking like I needed to go to assisted living (COULD YOU IMAGINE?!?!) I don't know how or why I was the lucky one to get to marry him, but I am thankful.  There's just no one else I could have married that would be my voice and my temper and my stubborn when I needed it so badly.

So What Happened?
I don't freaking know.  They think it was some sort of virus that just attacked my lungs.  My metabolic condition didn't help things because I decline so rapidly. I hate knocking doctors but some of them just were not listening and it was not working in my favor.  I was put on a ventilator three times.  Pulled off twice too early. I was not strong enough and the doctors were not listening to my mother or my husband.   Before the third time, they said they were going to do a tracheotomy. My mama just about had enough of it then.  She called Dr. Kelley who immediately called and said that he will fly me out of there if they are not capable of taking care of me as he advises. There was no word of a tracheotomy since then.  I was then on the ventilator for four days.  Pulled off on the fourth day and stayed off. I needed time to build my strength to be able to breathe. Not many people in that hospital wanted to give me time. Then or after. I was being fed via feeding tube - that took two days for them to put in (with a metabolic condition, I can't fast.)  In my feeding tube, there is lots of protein. It has been this was since I was a baby. It hasn't failed me. But the doctors who didn't know me before January 1 thought they knew better.   They did not.   Apparently one doctor actually had the nerve to say that he would treat the symptoms once I was diagnosed. Are you kidding me? I've been undiagnosed for 32 damn years.  Do you think I faked it this whole time?!?! I wish I knew his name because I would give him a special shout out in my thank you letter.

So after I was pulled off of the ventilator - I am to assume this is January 9 or 10 by now, I wasn't out of the woods, but I was able to see the clearing.   A huge issue was that the CO2 in my body was sky high when I went into the ER.  Because of my muscle weakness I am unable to expel CO2 completely when I get too weak to breathe. That is why my head felt like it was going to blow up and that is why I couldn't breathe. That is also why after I was pulled off of the ventilator, my brain/body reacted as it would react in a panic attack only my brain would really tell my body to stop breathing.  After I came to on Tuesday, the 10th, I had a few more episodes and put on a bi-pap machine to help get rid of the rest of the CO2.   I was awake and I remember ALMOST all of it from then on out. My last episode was that Tuesday going into Wednesday and I woke up convinced I wasn't at CMC.  I was also convinced that I had a ghost busters mask on, so there's that.

For eight days I communicated via pen and paper. There were times that someone had to hold my wrist so I could write.  But with my love of words, I find it beautiful that when push came to shove it all came down the the written word that we've so abandoned in this tech age.

I kept my sense of humor. The nurses quickly learned that things suck a butt, that I'm sassy but funny. That I am a picky eater. That if it looks like it should be in Lennon's diaper, I won't be eating it.  One of my bracelets said "Limb Alert" because of my mid-line catheters. When I was moved to a step-down unit, I warned the nurses that yes, I do have limbs and that I planned on keeping them.  I also asked if they had a bracelet for sassiness and if there was one to indicate that I was vocal.  They chuckled.

I have been stuck approximately fifty times.  I have more bruises than I've ever had at once.  I have had two mid-line catheters - Google that if you don't know.  I have a voice that sounds like a 85 year old smoker.  I am tired.  I am alive.   I am grateful.

But I was pissed.  And I was even more tired.  I was tired of this nonsense all of the time and I do believe if I didn't have my Lennon, I would have just thrown in the towel. I asked Dann a thousand times why I can't just be normal. Why I always have to go through the hard shit. I had myself a well deserved pity-party, brushed my feeding tube off and then focused on getting better.

I will close with this because I am exhausted, but I know so many of you wanted to know what happened.  If you're reading this, then you know me.  You know my condition.  You know my perseverance and my stubbornness. You know that I am sassy and can be a sarcastic jerk.  You know my drive and my setbacks.  You know I do not rest for long nor do I let that much stop me. You know that I am funny and I try to be kind.  I am generous and that I only say no when I must.  You know that I am grateful and I am humble. You also know that I am stuck in a body that limits me every day.  That obviously betrays my spirit whenever it pleases. So I want to ask you this one simple thing to do from here on out - and I only ask this of family normally - love your body.  Appreciate your perfectly abled body. Take care of it. Be grateful every day that your body works. That you can get up and get dressed and brush your teeth.  That you can walk down the street with ease.

And you know what, tell your friends and your family that you love them.   Tell them every single day.  Hug them.  Hold their hand.  Appreciate every moment you have with them.  Take photos.  Regardless of what you look like. Those photos will be all your family have left when you're gone.  Be grateful for every moment you have. I was making a damn wineglass and 24 hours later I wasn't breathing.

Again, I appreciate your continued prayers, juju, vibes, and thoughts as I recover.  It will be a while because this one really knocked me on my arse, but I'll get better. I am forever grateful for you all, genuinely. You've all made me smile even if I didn't respond to your message or post or whatever (I am tired!) I hope to get in touch with you in the coming weeks.




xoxo, A