Between Benjamin and Elizabeth we miscarried. I was 12 weeks along. We had no signs or symptoms that anything was wrong. As we went for our regular checkup I told Jason that I was glad we were going in because I felt uneasy about everything and was ready for some reassurance. That reassurance never came, the ultrasound rendered no heartbeat and the dark quiet let to our heartbrokeness. We went for another ultrasound after that weekend which revealed the same thing and then scheduled a D&C for later that week. Words always escape me when I think about the loss of our baby. I was so devastated and so many feelings and emotions went through me. Honestly, I still, from time to time, think back on some of those feelings. Gradually as we were able to talk about it we found many around us who had suffered the loss of a baby as well and found great comfort in the family God had placed around us. If you have ever experienced this, or ever do...I am always a listening ear. Just know your not alone. I tell you about this loss because to exclude it would not be our whole story...we look forward to meeting our little baby in Heaven one day.
The D&C: I had never had surgery before. Never been in the hospital. Never experienced this side. I asked all the right questions. Got answers I felt comfortable with and went into surgery. I was surprised when they rolled me into the operating room, that I had a CRNA and not the anesthesiologist that I had spoke with, handling my anesthesia. Dr. Babb held my hand as the CRNA put me to sleep. He was very comforting and I am grateful that he was my doctor through all of that. I woke to them pulling the ET tube (endotracheal tube) out of my throat. My first question was "what went wrong? Why did they intubate me?" They had told me they were going to use an LMA. The response was that this is standard procedure. And there began my problems. Now, saying that, after some research, I do not feel that the tube was the only thing that caused my stenosis, I think hormones defiantly play a part, but I do think that there was an injury there that initiated a inflammatory response.
After the D&C: I started having breathing issues pretty much within a month of being intubated. I had a sore throat for about 2 weeks after and then had pneumonia within a month. After that I started seeing my primary care doctor every 6 weeks for about 7 months trying to figure out my: sinus, asthma, anxiety...triage of misdiagnosis. During this time I had no idea what was in store. I really didn't think it was that bad initially. I thought I just had normal winter illnesses. I waited my 3 months and then we got pregnant again. By the time I was 6 months pregnant I was in a bad place. My breathing was awful. I felt like the baby and I were both going to die. I was scared and had no idea what to do. That is a terrible feeling. One I hope to never have again. Still makes me sick to think back on it. I was working one weekend (I was still full-time in the ICU then), we were sewing a patients head up and my other patient coded. It put my breathing into a spin. I remember thinking I just might pass out. It was crazy trying to manage all of that and feeling so bad. I could not breathe. We got all of that under control and one of the pulmonologist "happen" to come to make rounds. I say "happen" because this was certainly God's timing. I needed someone to see me when I was at my worst. He knew me and knew I never ask for anything. I must have looked pretty bad. He looked at me and asked "what the hell was wrong" with me. His words, not mine. I started bawling. I said "something is really wrong with me and if someone doesn't help me than this baby, (rubbing my belly) and I are going to die." He asked me what was going on. I told him that my husband thought I had tracheal stenosis (TS) but that I didn't think it could be possible. Jason had researched my symptoms because it had gotten so bad and we knew something had to be terribly wrong. Dr. Worley listened to my throat and told me to come see him the next day. I went in the following day, he ran some tests and scheduled me for a bronchoscopy. Now mind you, I was 6 months pregnant by this time.
The Diagnosis: Two days after our meeting in the unit, he was doing a bronchoscopy on me. I was given the official diagnosis of Tracheal Stenosis (TS) and my airway was 90% occluded. The diameter was about the size of a pen. If I had been in a car accident they never would have been able to get me intubated. Dr. Worley began the process of researching what to do for me, calling many doctors across the states, and getting the hospital trained in new ways to treat me. Slowly, he began to release the layers of scar tissue that had formed circumferentially around my trachea. This was done in the operating room where they could keep better watch of me and the sweet baby in my belly. Jason and I were so scared. We never would have purposely put a child in this position, in this danger. After about 12 surgeries I was to far along in the pregnancy to continue so we had to hold off and wait for the baby to be born. On November 1st @ 4:44 pm a beautiful, strong, HEALTHY baby girl was born to us. Elizabeth Mae, as beautiful as ever she was our amazing gift from God. I was so scared for her..so afraid for what might be since I was so sick while pregnant. She was perfect that day and still is, and continues to grow more and more beautiful. I pray that we can raise her to know how blessed she is and that God has great plans for her. Two weeks after we had her we began back in with the surgeries. I had a total of 18. Through all of this, my amazing husband took complete care of me, Benjamin, and our new baby. My doctor, Dr. Worley, did everything he could, went to every extreme to make sure I got the best care, and called and spent many hours on the phone with other doctors and with Jason and I. He certainly was an angel in disguise, just when we needed one. We also, had many friends and family praying and helping with meals and babysitting. God most definitely strengthened us during this time.
That was back in 2007 and early 2008. In 2009, we started having those aches for another baby. We were scared to try again and had been discussing adoption. I had a checkup scheduled with Dr. Worley....the time approached and I missed my cycle... We figured I better test at home instead of having the hospital tell me after doing preop. So, I tested at home and ..you guessed it...I was pregnant. Oh man, talk about some mixed emotions. Of course we were thrilled but also very cautious. We cancelled the bronchoscopy. I wasn't having any symptoms and I felt fine so we tried to just enjoy our last pregnancy. I had a great pregnancy and then on April 29th a sweet little boy was born to us, Isaac Lucas. He is so full of life and brings so much joy to us.
Where we are now: Up until now we have been blessed with about 3 years of no tracheal stenosis problems. That is a true blessing.
About 6 months ago I slowly started having "issues" again. It is really hard to pinpoint because my airway isn't like a normal airway. If I catch a cold it isn't like catching a cold before all of this. Sinus and asthma- things I didn't have prior to all of this are things I deal with now. It was difficult to say what was going on but I probably knew and just wanted to live a little longer in denial. About a month ago it was getting really bad though and I did know. Dr. Worley was no longer with his group so I had to find a new pulmonologist to go to. So I made an appointment, did her tests, and got scheduled for a bronchoscopy. Two weeks ago I had my bronchoscopy... and it was much more difficult than those in the past. I ended up in a step-down respiratory care unit overnight and was left with more questions and a need to be proactive in my care. My airway was 80% stenosed again. This would be about like breathing through a straw. She did open me up some but I will still need more...and that is where we need to start making decisions. The following is a picture of what my airway looked like at 80% stenosis. She did a treatment it is supposedly at 30% stenosis now (last 2 pictures).
Whats Ahead: Some people that develop subglottic tracheal stenosis have a underlying autoimmune disease called Wegners (WG). In the next day or so I will be testing to make sure I do not have this condition. This diagnosis will come with its own set of treatments and challenges. It just has to be ruled out to move on to other treatments. Most TS (tracheal stenosis) is idiopathic, meaning of unknown cause or is a result of a traumatic intubation. This is a chronic illness with no cure. What you can do, is have dilation's, laser treatments, cryotherapy, or the big one...a tracheal resection. We are to the point that it is time to get a second opinion from someone who really deals with this. Someone who is a expert. So, once my WG panels come back and we get all that sorted out. IF those test are negative, we will be trying to get to Boston (most likely) where the experts in TS and tracheal resection are at. All of it can be overwhelming if we think to long on it but we know that God is good and He has a plan. We know that there are many others in much worse situations. We know that we have been given so much and that we are always blessed with more than we deserve. We know that we have many praying for us. When I am unable to pray about it, Jason prays. When he is overwhelmed I pray. We have our weak moments and then we move on. So for now, we take it a day at a time.
What else is going on: Ok, so some of you are thinking....what about her foot??? What is up with that? Honestly, I am thinking the same thing. I broke it on the 3rd of July. I decided to gracefully fall down about 4 stairs at our house while (Jason teases me) "saving 30cents of electricity" by turning off the lights in the kids rooms while we went to church. This pretty much has cost us more than what leaving those lights on would have.. :) Originally they said I broke my 4th metatarsal and had a really bad sprain to my ankle and tore some ligaments. That has healed but I guess they missed a few things because they have now added a avulsion fracture further into my foot and a 3rd metatarsal fracture. So now I am back in the boot and doing a bone growth stimulator on it 3 hours a day. They are giving me 4-6 weeks for it to heal. If it doesn't heal then they are discussing surgery. This will all be after about 6 months of it not healing. We are discussing second opinions on this as well. I do wonder if the inflammation process that started when I broke my foot has triggered a worsened response on my TS. The doctor wouldn't verify this but I think it may have sped up the stenosis as it seems to have worsened in the last few months. So that is where we stand (for lack of better term..lol) on that.
So now we wait and pray. I feel so fortunate to have had 2 amazing, healthy babies since diagnosed, along with many more special moments as a mom, wife, sister, daughter, friend, and nurse. I hope that this hasn't been to much medical lingo...or to much of a bore...if it has, you always had the choice to stop reading :)...I just thought this would be the easiest way to go from the beginning and let people know what is going on. I am fine to answer any questions and ask you to remember my many tracheal stenosis sisters (90 % of those who have TS are women) in your prayers as well. I have been blessed to connect with many of them on facebook and have had great comfort in their stories and in not traveling this road alone. Thank you ALL for the many prayers you have said on behalf of us. You are all very special to us and are a great support to us...something we count as a huge blessing. I will try to keep this updated for what is going on and what our next step is...and of course to add great stories about the kids or whatever else comes to mind. :)
