So I don't make it a habit to post my personal medical history but I'm going to make an exception today. I just have a gut feeling this should be documented for future reference for myself and Porter and Ruby.
So most of you that read this blog know that I had a hernia repaired earlier this year. When I was pregnant with my giant beautiful baby Porter, he stretched my stomach muscles apart and unfortunately they did not go back together after he came out in May 2009. This caused a hernia that got worse over time. I had to wait until after Ruby was born to get the surgery to repair it ( as it would only get worse with each pregnancy) . I then had to find someone that was willing to do it and long story short, it was finally repaired in January of this year. Everything went well and I was super pleased with the results.
Shockingly, my muscles were very weak and it started to slowly come back out. ( Yes, that is sarcasm). Anyway, I was on a waiting list to have it repaired again, this time they would put in a mesh to reinforce it . I got a call last week, there was a cancellation and I could have my surgery Friday Aug 16th, which worked out perfectly, I wouldn't need to take any time off of work!
So fast forward to surgery day. I was scheduled to go in at 1pm. It's 1:15 and I'm still waiting and ready to eat my johnny shirt since I hadn't eaten since 8pm the night before. They tell me that my doctor is running behind and there is a possibility of it being cancelled. I'm super happy about that as you can imagine, but after fuming silently to myself for a few minutes, I decide that if it gets cancelled there must be a reason...and to trust that it will all work out.
Shortly after 2pm my doctor appears, draws some lines on my lovely bulge and we're off to the races! Now here is where the story gets interesting...I remember waking up, well sort of, after the surgery and having someone yell at me. Then someone grabs my chin and I don't remember much else until a little later. Apparently they took my breathing tube out and realized that I could not breathe on my own, so they had to shoot me up with more anesthetic to put a breathing tube back down my throat. This anesthetic paralyzes you, every bit of you, including your lungs.
I don't know exactly how much longer after they administered the second round of anesthetic, but I estimate it was between 4 and 5 pm that I am fully and completely awake but unable to move any part of my body. A machine is breathing for me but it is not enough! Or it certainly does not feel like it is enough. I count 6 seconds and I get the tiniest burst of air. I count again 1, 2, 3 , 4 , 5, 6 ...puff...there it comes. BUT IT'S NOT ENOUGH! IT'S NOT ENOUGH!! I CAN'T BREATHE! I CAN'T BREATHE!! (Sorry for all the yelling, but caps lock doesn't even begin to express the panic that is going on in my head !! ) I am trying with all my might to move any part of my body. Nothing.
Then I start to think. "Oh my God, I'm dead..is this death?" Am I stuck in pergatory? In my head I am saying "Mom, Dad if you are here...help me! HELP ME!!!!!!" Nobody appears so I start praying and telling God that I need to be on this Earth and He needs to help me move my body so I can tell someone that I cannot breathe ! I'm not sure how much time passes, I hear the nurse calling my name and speaking to the other nurse " I've given her another sedative but she is still not sleeping". OF COURSE I CAN'T SLEEP!!! Honestly, as I type this, my heart is pounding just thinking of the terror I felt. Then I hear Mark, he is there. He is asking how long I will be like this. They suspect it will be most of the night and tell him to go and come back in the morning. Just when I think I cannot panic anymore, it gets worse. I am screaming in my head but nothing is coming out. I am trying to communicate telepathically to Mark but it's not working. Mark said he left around 7pm. All I can think is there is no way I will survive the whole night like this. The little bursts of air I am getting surely can't be enough to keep me alive all night. I will die. Or I will get brain damage. And there is nothing I can do but sit here and wait.
Then some time after, a glimmer of hope, I can move my tongue. But just a little. I start moving it in and out which in hindsight must have looked ridiculous. Like a lizard or something. But in my head I think, ok, if they see me moving my tongue like this they will realize I am in distress and give me more air! A nurse comes in and I try so hard to move and I think my hand twitched. She calls another nurse and and says "perhaps we should give her another sedative, I don't like this twitching". Then more panic sets in, because I have no idea why I am paralyzed so in my head, maybe it is the sedative? So I stop. No more lizard tongue. I wait. I panic and wait. I talk to God. I think of Porter and Ruby and Mark. I pray. I am crying in my head but there are no tears. I count 1, 2, 3, 4, 5, 6 puff.
Then finally at 9:45 pm , I can move my arm. The nurse comes in. I can't open my eyes or do anything else but I can move my right arm. I motion that I need a pen to write down something. She gets a pad and I write down that I can't breathe. She calls another nurse in and I write it again, I can't breathe, take this tube out! She gets the doctor and thank God, they take it out. I cough up a whack of phlegm and then there it is...sweet glorious AIR! I can breathe, I can breathe! They put an oxygen mask on my face and more AIR! Ahhhhhhhhhh! Then slowly my body starts to wake up, my eyes are still shut but I can feel my feet and eventually everything. I cry, I hold back the ugly cry. I can't describe how grateful I am.
I have the mask on and my eyes are still shut but I feel the need to keep writing on that pad. I tell them that I thought I was dying and that I am so grateful to be alive. They explain what they think happened. It's called pseudocholinestrase deficiency. I have read a few different websites but this one sums it up well.
http://ghr.nlm.nih.gov/condition/pseudocholinesterase-deficiency
I am getting bloodwork to confirm that this is indeed what I have but it is also hereditary so I just felt I should post it here. We will have Ruby and Porter checked as well, but even if it comes back negative for them, I want this to be in print so they can be aware that this could happen in their future, after all, I have had surgeries before and have never had a reaction like this??
I also read on a different website that someone with this deficiency should never use cocaine as they could go into cardiac arrest. PORTER AND RUBY, I pray that you will have the wisdom to never try such a dangerous drug, or any drug for that matter, but PLEASE do not risk your life!
I also can't help but think that this may be a piece of the puzzle in understanding Porter's autism. If you are deficient in this enzyme you cannot break down certain toxins well. There is an abundance of research that suggests that people with autism have more toxins in their body, they are unable to get rid of them like the typical person. This enzyme is also believed to be involved with nerve signals. NERVE SIGNALS! There are some wires that are not connected properly in Porter's brain. They stop him from speaking. Could this be part of the reason?
Anyway, I will get the results of the test and then go from there. I believe everything happens for a reason. I hope this day of terror will turn into something that can help my boy.
Now, take a deep breath...you feel that? That is air running through your lungs. Be grateful.
