May 29, 1997
The 1st Epistle of Jennifer
To anyone that can and wants to pray:
Hello, everyone! I have a pretty major prayer request, and rather than repeat this detailed story over and over, I thought that I'd might as well write it out in letter form. Please feel free to give this letter to anyone that you think would like to pray about it. At the risk of making this an "everything you never wanted to know about Jenny's medical conditions" letter, I've decided to be as detailed as possible so you can get a pretty good idea of what I need prayer for. As I write about this subject, I think about the persistent widow in Luke 18. I have probably driven God batty with my constant petitions regarding this upcoming event. I figure it wouldn't hurt to have a few more persistent people petitioning God about it as well. So let me start my story...
For those of you that don't know me that well, I am a 26 year old wife (almost 6 years) and mother (of a three year old girl). I also have a form of Muscular Dystrophy called Spinal Muscular Atrophy II. This disease attacks cells in my spinal cord and leads to progressive muscle weakness. I currently have to use an electric wheelchair to get around, have only limited use of my arms, and am susceptible to pretty nasty respiratory infections like bronchitis and pneumonia. My husband, Lee, is very helpful and supportive. He works full time and takes complete care of my daughter and I almost single-handedly. My daughter seems to think it's natural to have a mommy in a wheelchair and helps out in ways that are probably beyond her 3 years of age.
Anyway, my prayer request involves the fact that I am pregnant with my second child. I am scheduled to give birth in mid-June. This otherwise happy news, is overshadowed by the memories of what occurred when I gave birth to Emili. Because of my Spinal Muscular Atrophy and a few other reasons, I am not able deliver a baby normally. I have to have a c-section. Prior to having Emili, I actually found this fact comforting, since I knew I'd not have to deal with a 36- hour labor like I had heard horror stories about. Knowing what I know now, I almost think a day and a half labor would be pleasant.
Prior to Emili's birth, I had a quick consultation with an anesthesiologist. He told me that because of prior surgeries on my spinal cord to correct a severe scoliosis, I would not be able to have the usual epideral women get when having a c-section. I would have to have the surgery under a general anesthetic. When I had my spinal surgery at the age of 16, I also had had a general anesthetic with very few complications. I imagined this time would be no different, and looked forward to sleeping through one of the most painful things women get to do. I lived happily in this dream until the day of Emili's delivery.
The day of the scheduled c-section, I met the anesthesiologists that would actually be present during the surgery. They checked me out about a half of an hour ahead and asked me to open my mouth so they could get a look at my airway. Unfortunately, during the 7 years since my spinal surgery, my jaw muscles had contracted and I was only able to open up my mouth about 1/2 inch at best. When the anesthesiologists saw this, they began to freak out. They feared that they would knock me out and not be able to get a respirator tube down in me. They emphasized that if this would happen, both I and the baby would die. I wasn't so worried about my own well- being, but they really played on my maternal feelings regarding the well-being of my baby, and convinced me they had to put the respirator tube in me when I was awake. I knew it would hurt badly because from past experience with spinal surgery, I knew it wasn't very pleasant to have a respirator tube removed. I was sure getting one inserted was worse. They assured me they would numb my throat with a shot injected in my neck so the procedure would be more "humane". I was still terrified as they wheeled me to surgery.
My worst nightmare came true. When they injected the "humane" local anesthetic shot into my neck, I immediately was unable to breathe. After several futile attempts to get the respirator tube down through my mouth, they jammed it down my nose, scraping my throat all the way down. In the three years since, I have heard conflicting stories on what caused this. The anesthesiologists claimed that because of my weakened condition, I was unable to handle the natural secretions in my throat once it was numb. Basically, they said I was drowning on my own spit. Now I had had a lot experience choking on spit and snot during past respiratory infections. This seemed totally different to me. It was like someone had stuck a cork down my throat. But I lived on a respirator for a week or two in intensive care, believing my lungs had suddenly weakened at an unbelievably rapid rate. Then I had a doctor friend visit from my old church. He came in saying, "Well, I understand from your chart, you had an allergic reaction to the local anesthetic and your throat closed off." Things suddenly made more sense. I couldn't breathe because my throat had swelled shut. I've operated on this explanation since, avoiding this particular local anesthetic at all costs. (In fact, I've had some painful procedures performed since without local anesthetic because I was afraid my throat would close off again.) And finally, Lee says that he heard speculation that perhaps they had given the shot too close to my vocal cords, causing them to spasm and seal off my airway.
Regardless of the cause, the trauma to my throat from insertion of the respirator tube caused two things to happen. First, I got pneumonia and the doctors decided I needed to stay on the respirator for a week. It was a horrible week that I would not wish on my worst enemy. I couldn't talk because of the respirator tube. This made it virtually impossible to tell nurses and doctors what I needed or ask questions. I couldn't eat or drink anything, also because of the tube. And I was constantly half-suffocating on snot. Second, when they did eventually attempt to remove the respirator tube, my damaged throat swelled right back up, they had to knock me out again, and put the tube right back in. I spent another mute, hungry, and airless week in intensive care, waiting to undergo more surgery, while my healthy newborn got to go home with Lee.
The doctors decided I needed to get a tracheotomy so I could give my damaged throat time to heal. The tracheotomy allowed me to breathe through a hole in my neck instead. It made it much easier to breathe, but until I got a 'talking' trach a couple weeks later, I still could not talk. I also wasn't able to eat or drink for a few more weeks, except through a tube the put in my stomach. And all the while, I only got to see my new baby for short visits once a day or two.
After about six weeks of doctors arguing about whether or not my lung capacity was good enough and whether or not the pneumonia was better or not, they let me go home. I got the trach and the feeding tube out a couple weeks after that. All in all, during my two months of recovery, I almost died 5 times. I'd love to say I had wonderful near-death experiences, involving Jesus and angels, but I didn't.
Mentally, I wasn't much better. Now I lived in constant fear about my breathing. Sometimes I would concentrate on my breathing so much, I'd actually make myself short of breath. Whenever I'd get a cold, I was terrified I'd end up on a respirator again. And I'd have terrible nightmares about drowning or suffocating. But more than anything, the experience severely warped my view of God. I wondered endlessly why God let me go through such a terrible experience. Somehow I decided that God must be punishing me for some reason, perhaps that He even liked to see how much He could torture me before I snapped. Whenever I'd read my Bible, I'd inevitably focus on passages that talk about God punishing His children like in Hebrews 12. I became, and still am in some respects, a very cynical person. In passages like Matthew 7, I almost expect God to give me a stone instead of a loaf of bread and a serpent instead of a fish. Then to make everything worse, I think I must be totally faithless to have all these doubts!
So here I am, pregnant again. Lee is happy. Emili is happy. And even I am happy, but I am scared to death too. For awhile I thought maybe I could have the baby via c-section while in a 'twilight sleep' (I'd be unconscious, but still breathing on my own). The anesthesiologist said this wouldn't be safe because since I was pregnant, I might end up vomiting during the surgery and choke to death. Another anesthesiologist thought she had done epiderals on people who had had spinal surgery similar to mine, but my anesthesiologist said she must have been mistaken because I do not have epideral spaces at all. My anesthesiologist toyed with the idea that I have the baby with a special kind of spinal block, but eventually decided against it because there would be an 85% chance I'd get a terrible spinal headache that could last a month, and he wasn't completely sure he could even do it with the aftermath of my spinal surgery. He also mentioned that in emergency situations, he had heard of c-sections done completely with local anesthetics, but that most doctors had never done one this way and most would never want to. I mentioned this to my doctor on my last visit to get his reaction. Amazingly he had performed one this way, but said it was excruciatingly painful for the mother. (You know it must be bad when a doctor that is trained to say things like "you should only feel a little pressure or pinch", makes a face and emphatically declares a procedure torturous.) I got the impression he wouldn't be too keen on the idea of handling the birth this way.
As a result, I am left once again with one option - general anesthetic. (I've tried to convince them to just give me a cheap bottle of whisky and a leather strap to bite on instead, but no one has agreed.) I must admit the anesthesiologist I have now is really working with me. He said he'd knock me out before putting the tube in my throat this time, avoiding the side effects of the "humane" shot. He also arranged to have a doctor present in the operating room to give me a trach immediately if the need arouse. And he wants me to get allergy testing done to see if I really had an allergic reaction to the local. My doctors are also very positive and almost seem to look forward to the birth with as a challenge. But it is still terrifying to me because they still have to take the tube out of me while I'm awake, and since they aren't really sure why my throat closed off before, I am afraid it might close off again. If this happened, they'd probably have to put the tube back in me when I am awake or even put the trach in with me awake. OUCH! And then who knows how long I'd end up being in the hospital this time?
So, if you could, please pray that: a) Everything works out all right, and the surgery and tube removal goes smoothly; b) That I don't spend the next few weeks in constant fear and actually trust God not to put me through another torturous experience; and c) That I could somehow have the baby without general anesthetic at all, whether it be with some recently discovered or re- discovered form of local anesthetic. (I would rather experience a 1/2 of excruciating abdominal pain instead of months of respiratory distress.) Every night before I go to sleep, I ask God to give me "a loaf of bread, not a rock". I really need this to go well so I can start to believe again that God wants good stuff for me, not punishments or trials.
There are other things to pray about. Mainly that we find help to watch the baby once Lee returns to his 3rd shift job. Also, I hope everything is fine medically with baby, as any mother hopes. But frankly, if I get through this relatively unscathed, I will feel incredibly blessed!
Thank you for taking the time to read this. Any kind of prayer regarding this is greatly appreciated.
Sincerely,
Jenny Malatesta (aka izzie)
June 10, 1997
1st Epistle, Part 2
D-DAY has been scheduled for June 23 at 7:30 am. Currently, the anesthesiologist is planning on this course of action. First, he will put me to sleep, then intubate me with the use of a fiber-optic scope. If this doesn't work, he will have an ENT standing by to put a trach in me. After the surgery, he will wake me up (yuck!) before trying to take out the respirator tube. If I didn't already get a trach and my throat closes off again, the ENT will put in the trach when I'm awake (yuck!).
As a strange side note to answered prayer, I mentioned in my 'prayer epistle' that it would be good if they found a new or rediscovered an old anesthetic. Well, my anesthesiologist mentioned that he has been researching into local anesthetics since I may or may not be allergic to Xylocaine, and found out about a little known anesthetic from the 1950's. Weird, eh?
July 15, 1997
The 2nd Epistle of Jennifer
Well, what can I say but PRAISE GOD! The C-Section went without a hitch! I ended up coming home only 4 days later. The baby is fine as well - a little jaundiced, but fine. The difference between this birth and Emili's was like night and day. I'm still kind of half convinced I'm gonna wake up any minute and find I've been dreaming.
For those of you interested in the nitty-gritty details, here they are...
I checked into the hospital the night before, which ironically was our wedding anniversary. Earlier that evening we had eaten my 'last supper' (named so by ever-positive me) at Frisches with my sister-in-law and a few friends. Everything that happened that day seemed oversignificant, like I was stuck in some melodramatic movie. It was especially hard to drop Emili off at our friend's house so they could baby-sit her. When I waved good-bye to her through the van window, I thought it was the last memory she'd have of me. Lee was great though. He kept trying to lighten up the situation. He filled out my hospital admit form, answering the questions in crazy ways. One question asked "Who will help out with the baby when you return home?" He wrote "My sweet and loving husband". Another asked "Where will you go after leaving the hospital - home, office (I swear it said 'office'), or other. We joked I should check 'other' and write in "crematorium". They offered me a sleeping pill that night, but for some reason I didn't feel like taking it. Instead I spent most of the night laying in bed, praying and freaking out, in what I was convinced was my own personal Gethsemane. Lee who slept over on a hospital cot, told me to wake him if I started sweating blood.
When they took me to the OR at 6 that morning, I was totally freaked out, but I forced myself not to cry so my air passages wouldn't get clogged up. They hooked me up to monitors and discovered my heart rate was 150 beats a minute, nearly three times my normal rate! After several verbal attempts to get me to calm down failed, they gave me some drug similar to Valium. It managed to bring my heart rate down to 130, but I still kept setting off the monitor's alarm. Dr. Hadaway, the anesthesiologist came in shortly afterwards, and my heart rate promptly increased again.
Dr. Hadaway started to prepare me for surgery then. It was very strange how he did it. He decided he was going to nasally intubate me - i.e., put the respirator tube down my nose - instead of going through my mouth. In order to get ready to do this, he had to get my nasal passages good and clear and 'stretch out' my one nostril. He started by shooting all this nasal spray in my nose, which seemed to burn all the way down the back of my throat. But I kept breathing. Then he pulled out these 3 or 4 inch long tubes which he used to stretch out my nostril. The first had the diameter of a good-sized straw. He smeared KY jelly and the local anesthetic from the 50's all over it, and gently pushed it down my nostril. I kept breathing. Then he let it sit for a few minutes while he prepared the next tube, which had a slightly wider diameter. He took the first tube out and placed the second one down my nostril in the same way. I kept breathing. Lee, who got to witness this whole procedure, said the first two tubes looked slightly uncomfortable, but the third looked like it had the diameter of a dime. But even with the last tube in place, I kept breathing. I gagged a bit, but kept breathing.
The then took me into the actual surgery room, tube still in my stretched out nose. They prepped me for the surgery before knocking me out which was a bit uncomfortable. (I was suddenly sort of glad they weren't doing it under a local anesthetic.) The ENT, Dr. Wolfgang Deats, felt all over my neck and marked where he'd do a trach if need be. When everything was ready, they let me breathe in this anesthetic through a mask, which gradually knocked me out. (In fact, they did it so gradually, I wondered for a couple minutes if I was ever going to go to sleep.) The whole time, one nurse held my hand and Dr. Hadaway kept patting my head and telling me I was doing fine. After ten minutes, I was totally asleep and they intubated me with the fiber optic scope, I'm guessing via the tube that was already in my nose. The OB doctors, Dr. Clark and Dr. Peterson, did the whole surgery in only 20 minutes. Ravyn Alysha was born at exactly 8 am.
Supposedly, they took the tubes out while I was wide awake. I don't remember it though. One person from my church had prayed that at this point I'd be drunk on the Holy Spirit and wouldn't remember it. I guess I was loopy on something because I started talking crazily almost from that moment on. I kept thanking everyone. I called the ENT Dr. Wolfgang. I started quoting Saviour Machine lyrics. Lee came into the recovery room, and I talked non-stop to him. I'd cough up blood. Talk. Cough up blood. Talk. My throat was sore, but I was so happy to be able to talk, that I kept going for nearly 2 hours. The nurses kept commenting that they had NEVER had anyone talk so much after surgery.
So, that's the story. Spread the word I'm alive and kicking!