I am home. Since they backed way off on anesthesia and did the surgery as fast as possible and didn’t give me morphine afterward, I am feeling better then usual. Still tired, still sore, but not half-drugged and loopy or nauseated.
As far as my trachia, I was breathing through a 3-4 millimeter opening! The doctor was shocked, he apparently thought I was exaggerating and was relieved that they got me in soon enough.
I am still trying (trying!) not to talk too much, and resting as much as possible. I will try to post a picture soon.
Jan. 9, 2008 - Trachea Surgery Results -- No T-Tube!!! Praising God Here - Tracheal Stenosis receding
Trachea Surgery Results -- No T-Tube!!! Praising God Here - Tracheal Stenosis Receding
I don't have a t-tube!
I don't have a stenosis growing in my trachea!
When the Doctors went in to look with a scope before traching me; they discovered that the last surgery and a deep subcutaneous infection had caused a polyp!!! The polyp had apparently grown very slowly. Christmas Eve, I started getting rapidly worse. At the time of surgery Dr's estimate that I was only breathing through a sliver of my trachea. I have pictures to post to my blog later :) The polyp was only attached by a small section, so not much problems expected with scar tissue.
So, once they removed the polyp and measured the stenosis section they discovered that it was actually receding, not growing!!! My trachea was clearly more open yesterday then it was after my surgery last May.
Wow. That is so cool just typing that out...
So, I do technically still have a stenosis, but it is not growing anymore. And, they went ahead and excised it some more while they were in there. So, as long as it heals nicely, I will have even more of an opening then before.
I am on six weeks (6 weeks!!!) of antibiotics; so that is a bit frustrating. As the Dr. said to us though; he doesn't want the polyp thing to happen again, so he wants to make sure the infection is completely gone. I am trying to decide right now whether to start probiotics now; or if that is pretty much useless with 1800 mg of penicillin/k cav (each one is 875 mg) in my system every day and I might as well wait till the six weeks are over.
Jan. 1, 2008 - Trachea Surgery for Ideopathic Tracheal Stenosis -- Cricordotomy scheduled...
The surgery I am scheduled (again) for is a Cricordotomy; which involves removing the tissue causing the problem in my trachea, vertical splitting of the trachea; stretching it with a t-tube, ( a newer kind of trach tube, which will be corked) and letting it heal/finish scarring over time before removing the t-tube. The surgery my doctor described the last time I saw him was a tracheal fissure -- which is everything except the splitting of the trachea part. So, I am not sure which will happen, it depends on what they find when they go in. This same surgery was scheduled last May; and changed to something else while I was in surgery. So, I am not really sure what to expect.
My surgery is this Friday; and we arrive home from vacation tomorrow (Wednesday) and pick up my MIL in the evening. My husband and I will then head back to the wonderful hotel we stayed in last time on Thursday night; for what will likely be an early report time (I haven't heard for sure yet the time).
I am looking into natural methods to improve the success of the surgery; so if you know of herbs etc. that help with limiting scar tissue, healing tissue etc that would be of help. I think I am definitely ordering Juice Plus as a starting point.
Oct. 1, 2007 - Amy's Trachea -- An Update of Sorts
Amy's Trachea
I would appreciate your prayers.
I have discovered at least a small link between my ability to breathe and my gluten intake.
For those of you who don't know; my trachea has a stenosis; which was when discovered a 90% blockage. After two surgeries, it is probably at about 50% right now; maybe 60%. They couldn't take it all the way down in one surgery and were waiting to see if it would regrow (which it has) before pursuing a second surgery; since apparently 50% is acceptable for living.
Anyway, all along I have been saying that if I just didn't struggle coughing up stuff all the time; I could probably survive just fine. Well, I started noticing a correlation between the amount of gluten intake and the amount of mucous.
The problem is that my trachea is so narrow; it is hard to get enough air intake to cough things up; so then that stuff gets stuck halfway out in my narrow airway; and I feel like I am drowning.
So, anyway, today proves to be my first totally gluten free day; right down to the gluten free dinner simmering in the crockpot.
My plan is to switch myself completely to a gluten free diet during the next three weeks while my husband is on a military assignment elsewhere and my Mom is here to help me with my resolve. At the end of that three weeks, I will have a follow up appt. with my surgeon.
Also, while I am at it; I plan to put Anna on a gluten free diet as well; to see if it helps with any of her processing issues.
I need your prayers for consistency and commitment to this plan over the next few weeks!
What luck! The Doctor was generous and shared a copy of before and after photos. I insisted on asking, even though no one in my family actually expected me to get copies. It's my trachea after all!
The Good News:
They did *not* insert a ttbue or cricordotomy. Upon entering my trachea with a scope; they discovered that the cat scan was of very bad quality; and therefore a procedure they did not think was possible suddenly became possible. Basically, they shaved off the extra tissue and then injected the remaining tissue with steroids. Based on the cat scan, they would not have been able to "fit" the shaving mechanism into my trachea. So, I ended up with a very non-invasive surgery from which I already feel recovered except for extra sleepiness and a sore neck and lungs from the surgery and ventilator.
The Bad News:
While what they did today has a chance of being permanent; it is a fairly slim chance but one that is still "worth it" in the docs opinion because if it does work I won't have to worry about the really bad news.
The Really Bad News:
There is a good chance that I will either need repeat surgeries like the one today (as in up to 4 times per year) OR a PERMANENT Trache Tube! So, I am still coveting your prayers that this surgery and GOD will provide a permanent solution that doesn't involve trache tubes or 65 or more surgeries over the course of my lifetime.
Tikvah - Hebrew for Hope. For many years now; my e-mail address and on-line name has been Tikvah. In the face of a rapidly approaching surgery; I am increasingly encouraged by the idea that God is my Hope. Jesus is my Hope. Eternal Life is my Hope. God is in control; and I do not profess to know the will of God.
"For You have been my Hope Oh Lord, My Confidence since my youth. From birth, I have relied on you; you brought me out of my mother's womb. I will ever praise you... You are my strong refuge. My mouth is filled with your praise, declaring your splendor all day long." Psalm 71:6,7b, and 8.
"But as for me, I will always have hope. I will praise you more and more. My mouth will tell of your righteousness and your salvation all day long." Psalm 71:14.
Have you seen the movie? I mean; the actual movie entitled Facing The Giants. It is very good. Excellent in fact. The Giants are a football team; but also each of the little things standing as Giants in the way of each person's faith. At one point, the wife of the coach is asked if she will still love God even if she cannot get pregnant. Then, in one climactic scene; the she exits a Dr.s office after having a negative pregnancy test for the upteenth time -- completely devasted. This is her giant. "Yes God," she cries. "Yes God I will still love you.... Yes I will still love youl" over and over. It is a highly moving scene impossible to describe in print; perhaps impossible to understand unless you have begged God for a pregnancy and watched the whole rest of the movie!
A few weeks ago, it became very clear to me that my surgery in December had not permanently fixed anything. I had a cold; and suddenly I was once again struggling to breathe. I was alone with four children; and scared. I got over my cold; but as soon as help arrived; I went back in for my follow up cat scan. By the next day, my Dr. was once again on the phone. "It doesn't look good," he said, "In fact, the report says it is worse then before." Well if you haven't read my previous blog -- before was an 85% blockage in my trachia. I knew it wasn't as bad as that; I was and am functioning at a much better level then back in December. As long as I don't have a cold.
Over the next week before my follow up; I began to get more and more hoarse. At the follow up, Dr. Cummings had me walk up and down two flights of stairs. "Nope, it's not as bad as before -- you would never have made it before. But, we have to do something -- you are at least at 75%." I asked if that was what was making me hoarse and he confirmed. My diagnosis is an Ideopathic Subglottic Stenosis. Which basically means "There is something growing in your trachia below your vocal chords for no apparent reason, and we have no idea what it is; but it's not cancer." He recommended a surgery where a TTube is inserted and the skin heals and then the TTube is removed. What he didn't tell me then was that he will also be removing cartilage from my ribs and creating a bigger trachial opening in that section.
Driving home from church one day, it hit me. My voice may never return. My voice. My song. Always, I have had my voice. I sang in various musical leads and State and National choral groups all through high school , and completed a Music Performance degree with a full recital in college. After college, I sang in a semi-professional group in Ann Arbor MI. Most recently, I have not performed as often in the public eye, yet I have happily taught voice lessons for 3 years even though my voice was not what it used to be; sharing my faith with my skill as often as I could. What will I do without my voice? It is such a part of me. It is such a part of my walk with the Lord. It is such a part of who I am. This is my Giant. Will I still love God without my voice? Of course I will. Won't I? Mustn't I?
Yes God, I will still love you even if I never sing another lullaby. Yes God, I will still love you; even if I never raise my voice again in praise. Yes God, I will still love you even as my song stays only in my heart. Yes, God, I will still love you. I Will.I will still love you.
My surgery is scheduled for May 30 at 7:30 a.m. Please pray.
"After two years of not being able to read aloud to my children more than one and a half pages of a chapter book, or one short picture book — I can finally breathe!!! I am so excited. We have nearly finished George Muller, and I am totally motivated to get back into the swing of things. My doctor said my trachea sounded great yesterday, so unless more problems come up at a later date I will not need further surgery. I am still frightened, I think I can still hear something when I am exurting myself; but Perfect Love drives out fear; so I am asking God constantly to help me not be afraid and trust Him for my future."
I wrote this paragraph just a few short weeks ago; and since then we have finished two more books that have been waiting on my shelf during those two years. I thought perhaps I should share a bit of my story here on my new blog. Two years ago in January, I had a rash. It was not a small rash; though it did start small. It was completely symmetrical starting first on one hand and then the other, and eventually spread all over my body before Doctor's finally administered prednisone. During those 15 days, I became nearly insane with the deep burning constant itch. It was not an easy time. No Doctor ever convincingly answered the burning question -- what is causing this? The rash came back 5 times, dramatically less potent then the first, but still there. By the time May was rolling around, people at church were telling me I needed to go to the Doctor for my breathing. I couldn't walk with my friend without being completely out of breath. This was unusual for me; since Donna and I had been up to that point increasing our speed on our walk and I was improving on my trek up the hill.
Finally, I went to a Dr. He immediately diagnosed me with Adult Onset Asthma, put me on medications, and sent me home. My breathing did not get better. In fact, it began to get worse. I went back to that Dr. six more times, and by the 3rd visit I had discovered my pregnancy with Caleb and informed the Dr. Five times he changed my medicine and told me to come back in three weeks because NOTHING WAS WORKING, but he didn't want to prescribe stronger medication during a pregnancy. On the 6th visit, he immediately starting suggesting another new medicine; and after a few minutes of talking he looked at me and said "Are you pregnant?" I switched to a specialist and by now it was October. She did a Spirometer test, and fussed and fumed out in the hallway that I did not have asthma, and that I clearly didn't try very hard on the test etc. I couldn't really understand what she said; but I got the jist of it. She thought I was just a complaining pregnant woman with no problem! She did hear the loudness of my breathing once she examined me though, and put me on Pulmicort -- a child's medicine. I asked her if it was stronger than what I had already tried. She said, No not stronger, but different. So I took the medication faithfully, but I did not go back for my follow up appointment. In February of 2006, I had a beautiful baby boy. During the final stages of labor my breathing became so labored they put me on oxygen, my heart felt like it was pulling out of my chest. But I made it.
What followed were some of the hardest months of my life. I could NOT breathe. I could not read to my children even two sentences, I could not walk up the stairs, I could barely carry my newborn without struggling to breathe. No ammount of medication helped. I used rescue inhalers constantly; still thinking I must have asthma. Everyone thought my problem would go away if I would just take my medication. We were moving to Virginia, and in the course of that move I was exposed to ammonia in a hotel room, moved the next week after spending several hours in the specialists office with the nurse practitioner wondering why she couldn't hear breathe going into my lungs, nearly collapsed (alone with four kids) when my van's air conditioner stopped working in August heat, walked into an apartment full of smoke which I had nearly caught on fire by accidently leaving something on the stove and then the next day walked ten blocks to a Doctor's office after my son was attacked by a dog. The Doctor put me on oxygen and told me to find a new Asthma Dr. right away and get help.
Dr. Wu did a much more advanced analysis of my lungs. My lungs were fine. After listening to me, she showed me the charts. It looks like you're lung capacity is capped at about half the normal capacity. This could reflect poor effort on your part; but it could also be due to an obstruction. I want you to go get a cat scan done, and see an ear nose and throat specialist to check for polyps. So, I got the cat scan done and it came back normal. Of the two "best" Ear Nose Throat specialists she referred me to, only one took my insurance. He was over an hour away. I made the appointment with no small amount of frustration. Turns out he is considered one of the best Dr.s in the capitol area.
The Ear, Nose Throat Dr did a scope and did not agree with the cat scan results, and sent me for a fine cut cat scan with more detailed analysis. The second cat scan revealed a tumor in my trachea. On the day of that cat scan Dr. Furst called me and told me to come in with my husband on Monday. He did not tell me I had a tumor. The day after that appt.; I had surgery. My trachea had an 85% blockage. The Dr. who did the surgery was among the finest in the nation, perhaps the world. He is the Department Chair at John Hopkins, the author of the University textbook, a world reknown international surgeon, and a "friend" of my ENT. He returned from Europe on Monday, saw me on Tuesday, and did the surgery on Wednesday. He did the surgery -- not his residents. He did not allow a tracheotomy -- the entire team wanted to do one; he insisted that the surgery could be done without one. He did a biopsy, a tracheal dilatation, and bronchoscopy, and a larygoscopy. The trachial dilatation was accomplished by inserting scopes of increasing diamater into my trachea to dilate the tissue and restore it to its original size opening.
When I woke up I could breathe. Really breathe. And, I have been really breathing ever since. I have also been making more cookies, reading more books, playing on the floor. All those things that really matter. This is not over. Dr's found undiagnosable tissue. Not cancer! But why was it there at all? No one knows. I feel as though it is coming back; but slowly. God is in Control.
The bottom line is; We try not to insist on parent-led learning or gravitate toward child-led learning. We try instead to focus on God-led learning and ask for His input and perspective on every aspect of our home school. That way, when others fuss about what Dan and I are doing and make me second guess our decisions -- I can go back to our decision process and find God's fingerprints, reminding me that this is His way.
