Meet Sydney. She was born on May 25, 2000, just 2 days shy of my due date. Sydney weighed 7 pounds, 3 ounces at birth and was 21 inches long. She had lots of dark hair (which explains my chronic heartburn) and blue eyes and closely resembled her big sister, Brooke.
I won't bore you with all the details of my induced labor, but at the very end, just before Sydney was born, I had a horrible pain in my lower left abdomen where my epidural didn't seem to be working and I was unable to push. It was right at that time that Sydney's heartrate began to drop and at one point, the fetal monitor fell off her head. My OB very quickly pulled her out with a suction cup to get her out safely before anything happened to her.
When Sydney was first born, we thought there was something funny about her cute little cry. It was kind of like there was an extra little squeak in there when she would breathe in for her next breath as she was crying. Paul and I didn't think too much of it, but the nurses in the nursery and the pediatrician who first checked Sydney seemed to think there was more to it than that. The pediatrician called her condition 'stridor'.
During my hospital stay, several doctors came to talk to us about Sydney's stridor condition. Two of the pediatricians on staff where I delivered her came to explain to us their thoughts about her condition and how they were going to have the staff ENT (Ear, Nose & Throat Specialist) take a look at her. We willingly let all of the doctors look at her to try to determine what was the cause of her stridor. But, since the ENT did not specialize in babies, he was unable to give us an accurate assessment of her problem. The ENT told us that we should just watch Sydney closely and that she would outgrow the extra little noise she was making. At that point, we thought there was nothing seriously wrong with Sydney and that we'd be taking her home the next day.
The next day came and it was time for us to be released from the hospital. I was so excited to have a brand new baby to take home and I couldn't wait to get home and spend time with Brooke and our new baby Sydney. I had bought Sydney a brand new complete matching Gymboree layette ensemble, complete with matching blankie, and dressed her all up to 'take her home' from the hospital. We were all packed up and all ready to go home and just before we were ready to walk out the door, the nurse called me into the nurses station and said that the pediatrician wanted to talk to me. I went in to see what he wanted and he gave me a small piece of paper and told me that he had been in contact with a doctor at Children's Hospital and that they were expecting us. The doctor's name was written on the piece of paper. He said that we should take Sydney there on our way home to be checked out by the Children's ENT specialists. We live a half hour south of where I delivered Sydney and Children's Hospital was another hour south of our house, so this little trip was definitely not on our way home. We decided to stop at our house for a few minutes so we could make some other arrangements for Brooke to stay with our neighbors while we took Sydney down to get checked out by the specialists.
After making sure Brooke was going to be okay with the neighbors, we took Sydney to Children's. Our instructions were to take her to the emergency room and to ask for the specific doctor who's name we had on the paper. We were told she was expecting us and we assumed she would see us right away. When we got to the hospital, we explained to the admissions people what we thought was going to happen. The admissions girl took all our information and asked us to be seated in the waiting room. After a few short minutes, they called our name and took us into a trauma room that had a crib and nothing else...no chairs or anything. We put Sydney in the crib and stood by her side while we waited. We waited and waited and waited. Several doctors came in to look at Sydney and listen to her with a stethascope. One doctor after another would come, look, ask lots of questions, then leave, never to be seen again. We had to tell the whole story over and over again as to why we were there and who we were there to see. There I was, just gave birth 2 days prior, STANDING in a trauma room, waiting for someone to let us talk to the doctor who was supposedly expecting us. Since we didn't think we were going to be there for long, I didn't bring anything a new mother would need shortly after giving birth with me. I was in horrible pain and I was exhausted, yet they still made me stand there waiting. Finally the doctor we were sent to see showed up. She told us that they wanted to admit Sydney and that it would probably be another 3 hours until she could get her into her own room. We were so upset that it had taken this long for them to just determine that they were going to move her to a room for observation. We were told that we had to wait in line in the ER for all the critical patients to be taken care of before they could process the paperwork to take us to her room. At one point, we told them we were going to leave and take Sydney with us and come back in the morning after a good night's rest and admit her then. That is when the doctor we were sent to see told us that if we took Sydney home, she could die and that we would be refused service if we tried to come back because we were taking her home against their orders. Since we weren't sure of the policies and if what she was saying was correct or not (which now we know that it was not), we decided to stay and wait. We were in the ER for 7 hours waiting to be admitted...and supposedly, they were informed of Sydney's condition ahead of time and knew we were coming.
Sydney was admitted to a regular room where they put her on a pulsox machine to monitor the percentage of oxygen she was taking in as she breathed. We were given cots in her room and allowed to stay the night with her. Throughout the night, the pulsox alarm went off about every 10 minutes because the lead was not attached tighly to her foot or she would move and knock the lead off. During the night, they decided that Sydney had a touch of jaundice and decided to trade her crib in for an incubator with the bili lights on top. To top it all off, a nurse would come in and do her vitals every couple hours...needless to say, we did not get a real good night's sleep. And, for me just giving birth 2 days prior, sleeping on that cot was not real comfy.
The next morning, the doctor assigned to Sydney came in to have a look at her. He said he wanted the ENT's to have a look at her and that she might need a tracheostomy depending on what the problem causing the stridor actually was. I was devastated. I didn't want my little baby to have this, no matter what it was. I cried and cried. I don't know if it was due to lack of sleep or post pardom blues or what, but I was so upset at the thoughts of them putting a hole in my brand new baby's throat. During that day, we talked to the doctor several times and together, we decided that we needed to go home to get a good night's rest and come back when we were fully rested. Since we were not staying in the private room with Sydney, the doctor thought it best to move her to the NICU (neonatal intensive care unit) where she would have constant supervision. We agreed this would be the best thing for her. We went home for a while and they moved Sydney to the NICU.
When we came back later that same evening, we were told Sydney was in the NICU. The receptionist told us how to get there and how to get in once we were there. We had to go to the waiting room and use the phone in there to call the nurses station to make sure it was okay for us to come in. Each time you wanted to enter the NICU, you had to follow these procedures just in case there was something going on that they didn't want you to see. We got there and called the nurses and asked if we could come in. Since this was our first time, one of the nurses came out and got us, told us the 'procedure' of how to 'scrub in' each time and showed us to Sydney's bed. She was way in the back far corner of the far room. We walked past dozens of teeny tiny babies who looked much worse off than her. As soon as we got to Sydney's bed, her nurse informed us to not look at the other babies and not ask about the other babies and just concentrate on our own baby. I guess that was for the patient confidentiality. Anyway, when I took a look at Sydney laying there in that bed, under the bili lights, with the shades on to protect her eyes and hooked up to all those monitors and machines, I just started crying. Why was my baby girl having to go thru all this? I couldn't believe it.
During the next several days, they did every test they could think of on Sydney. She had MRI's of her neck and head, swallowing tests, reflux tests, an EKG, several x-rays of her head and neck and probably more that I can't remember. The ENT's wanted to do a scope down her nose to see what the problem was and they warned us that if it was a narrow airway, that they would have to put in a trach tube (pronounced TRAKE). We were so upset and I cried and told them I didn't want her to have the tracheostomy. They did the scope down her nose to see what the problem with her airway was. They found that her vocal cords were paralyzed. The right vocal cord was completely paralyzed, and the left one was partially paralyzed. Normal vocal cords slide out of the way when you breathe in and out, but since hers were paralyzed, they did not. This was the cause of the stridor she had. They did all the other tests to try to find out why this happened to her vocal cords. The only thing they could come up with is that there was some sort of trauma to her neck during my delivery of her which damaged the nerves controlling her vocal cords.
During the scope procedure, the ENT decided to not give Sydney the trach at that time. They decided it would be okay to send Sydney home with an apnea monitor and a pulsox machine and we would watch her to see if she could survive without the trach.
We took Sydney home for about 5 weeks until her follow up appointment. During that time, the stridor continued to get worse and worse. She was obviously having a more and more difficult time breathing and eating. At 5 weeks of age, she was barely at her birth weight instead of gaining 2 ounces a day like a normal baby. We did everything we could to try to get her to eat normally and gain weight but she was having such a difficult time breathing, that the weight gain just wasn't happening. When she would breathe in, her whole rib cage would collapse and she was really working hard. You could see her mouth distorting as she strained to breathe. Thinking back on it now, it sure was scary. We tried like anything to keep her happy and not let her cry so she wouldn't work even harder and burn more calories. I guess we thought we could keep her happy and not ever let her cry and she'd be okay. Any of you with babies know that is not possible!
Here is a picture of Sydney just before we took her in for her checkup.
We went for her checkup on July 18, 2000. At that time, she was still only barely above her birth weight and the ENT said he saw no improvement in her vocal cords. At that time, they gave Sydney a tracheostomy and put in the trach tube. Even though I knew it was inevitable, I cried and cried. I didn't want her to have to go thru all that. The first time we were allowed in the IICU (Intermediate intensive care unit) to see her following getting the trach, she looked so peaceful and so at ease breathing and sleeping. As sad as I was over her having to have that done, she did look like she was so much more comfortable. I think that was the first time I saw her smile, when she saw us at her bedside after she had the trach put in.
Sydney was in the IICU for about a week until the ENT's changed the trach tube one time. After that, they moved her to a real room where we had to learn how to suction and care for her trach. We were not allowed to take Sydney home until all of her care takers were checked out on cleaning, suctioning, changing and caring for her and her trach. There was a lot to learn. We had to each take turns suctioning and changing her trach, both in a controlled manor and in an emergency situation. It was very overwhelming and intimidating at first, but now we are experts at the whole process.
The ENT told us that he expects her vocal cords to make a full recovery. Since vocal cords are controlled by nerves and nerves can regenerate themselves, he does expect them to recover completely. However, this is a slow process that could take up to 2 years. Sydney's vocal cords could heal before the 2 year time frame and she could have the trach removed at that point, but if there is no improvement prior to when she's 2, the ENT will do surgery to correct the problem by moving one vocal cord over or taking a piece of one out so that Sydney will not have to have the trach forever. This surgery will alter her voice, but at least she can live a normal life without a trach.
Shortly after Sydney was sent home with her trach (about 2 weeks later), she developed pneumonia. She turned very white, had a fever, was breathing super fast, wouldn't eat, and was throwing up. Our vising nurse came that day and told us that she needed to go to Children's and be put on an IV to get re-hydrated. We took her there where she was admitted to a regular room and put on an IV. She stayed there about a week and was released to us and was put on a prescription of ceftin antibiotics to get rid of the pneumonia.
Two days after her prescription ended, Sydney once again developed pneumonia, only this time it was worse than the first time. I took her to her pediatrician's office first thing in the morning so they could look at her as soon as they got there and she was so blueish gray that they put her on oxygen. They had to rush her to Children's in an ambulance. Once we got to Children's, they put her on a ventilator to control her breathing. Since she was on the ventilator, she had to go to the IICU again until she was able to breathe on her own. After several days, they weaned her off the ventilator and moved her to a room. Since they sent her home on oral antibiotics that didn't seem to do the trick, this time, they sent her home with a PICC line and we had to administer IV drugs to her to continue her medication for the full 10 days to hopefully get rid of the pneumonia for good.
Since that second bout with pneumonia, Sydney hasn't been hospitalized again, but she has been sick on and off all winter. It has been one vicious cycle, she will get sick, the doctor will put her on antibiotics, she will finish the antibiotics and get better and within a week of the medicine ending, she is sick again. She is scheduled for scope in the hospital every 3 months to monitor any progress of her vocal cords, but her first 3 month scope had to be post-poned 3 times due to illness. She had her first scope after the trach was put in on January 5, 2001. At that time, the ENT said that he saw some movement at the back of her vocal cords. At that time, the ENT tried a speaking valve on Sydney's trach. A speaking valve will allow the air to pass IN thru the trach but force it to come OUT thru her mouth and throat and allow her to make vocal sounds. In order for the speaking valve to work, there has to be enough room in between the trach tube and the inner walls of her trachea. At that time, there was not enough room for the speaking valve to work, so they would not send her home with one.
Sydney had a scope in the OR on April 13th, Good Friday. At that time, the ENT found NO improvement at all in her vocal cords. At this scope, the ENT doctor told us that the healing was a slow process, but that once they do start moving, they usually heal completely all at once. Then, he told us that if there was no improvement by the time it is time for Sydney to go to school, that we'd have to consider some type of surgery. We were saddened by this news. Originally, we had been told that the surgery would take place if there was no improvement in 2 years and now he was telling us 5 years. I asked what happened to the 2 year time frame that we were originally told and he said that they don't ever like to do surgery unless it's time to go to school. I am not sure where the communication mix-up occurred, but we were under the impression that the time frame was 2 years, not 5. So, we will just wait and pray that her vocal cords heal themselves in a much shorter time than the 5 years before they will do the surgery.
Sydney has a follow up in the office in June and her next scope is scheduled for August 28th, and any prayers you could send Sydney's way would be greatly appreciated. While it would be so wonderful to have the news that her vocal cords are completely healed and the trach can come out, we'd be happy if even the speaking valve would work. We should be able to have the respiratory therapist try the speaking valve when we go for the next scope.
Until Sydney's trach comes out, or until the speaking valve works, we cannot hear her making any sounds at all. She can't cry, coo, giggle, talk or make any sounds. She does make some noise thru the trach...enough to get her point across when she's upset, but still we can't hear her making any sounds. This is particularly disturbing when we KNOW she is trying to coo or make sounds but we know she can't. Recently, Sydney has learned how to make some noises by squeezing the air between her tongue and the roof of her mouth and also she has learned how to smack her lips together to make a different sound. Even though she can't speak or use vocal sounds, she still has learned how to make some noises. We are also trying to teach her some sign language. She now knows Ma-Ma, Da-Da and More...we'd teach her more words, but we need to go and buy a book so that we know other signs to teach her!
Today is June 18, 2002 and it's been a long time since I updated Sydney's story. I will try to remember the details since the scope back in August...after that, Sydney had a scope in November, 2001. At that time, her doctor was very pleased to come to the waiting room to tell us that he saw definite improvement in Sydney's vocal cords. He told us that they were now moving at about 25% of their full potential. He said that in order to have the trach removed, they needed to be moving at 100%, but the news that they had started moving at all is definite progress. The doctor also told us at that time that once the vocal cords start to move, they normally heal completely within a short period of time. He told us he wanted to see us again right away and said we should schedule another scope for 2 months from then. Once again, they tried the speaking valve on Sydney and once again, it didn't really work so they wouldn't give her one to take home.
We did as the doctor recommended and scheduled Sydney for her next scope in January 2002. She had the normal procedure done and we were hoping to hear good news again that time. However, once again we were not so lucky. The doctor came out to us in the waiting room and told us that he couldn't really see any improvement at all from her last scope in November until now. We were very disappointed, as we were hoping to hear at least a little more improvement. The doctor told us to not come back for another scope for at least 5 or 6 months.
We did get some good news this time. The respiratory therapist tried the speaking valve while Sydney was in the recovery room and FINALLY, he decided there was enough air getting through that she would be able to tolerate it and he gave it to us to take home. We were thrilled!
When we first started to use the speaking valve (Passy-Muir valve), Sydney would only tolerate it for short periods of time. She learned how to 'cough' it off by coughing thru her trach real hard. I'd say she could wear it for only about 5-10 minutes. Since she wouldn't keep it on very long, we were fairly lax about using it at first. If she was sick, we wouldn't use it because she was already having enough trouble breathing that we didn't want to cause her more problems by forcing her to wear the valve. Other times, we just didn't take the time to try it on her for one reason or another.
In February, we had an appointment with the ENT in his office for a checkup. During the visit, he was asking about Sydney's speech. When I told him that she could only say one or two words, and even those weren't very clear, he recommended that we try wearing the speaking valve more often. When we got home after that appointment, I decided to make a concerted effort in getting Sydney to wear the valve. I would put the valve on with a little twist (so that it was harder for her to cough off) and eventually over the period of about a week or so, she was able to tolerate the valve all day and all evening. I took it off (and still do) while she was napping just to give her a break but since late February, Sydney has been able to wear her speaking valve the entire time she is awake. While wearing the valve, she rarely needs suctioned and it's hard to tell she even has a trach. Once she started wearing the valve all day long, she also started talking all day long as well. She says 'Ma Ma' about 20-30 times an hour and she's trying to say all kinds of other words that she hears her big sister saying! She's talking in full sentences now...if she has a speech delay, it's very minimal if any at all.
At the end of April, one day while we were all in the kitchen, Sydney decided she wanted her shirt off (for some reason). I stopped what I was doing, reached down and pulled her shirt off over her head and went back to what I was doing. After a few minutes, I heard Sydney making a funny sound out her trach. It sounded as if her speaking valve had fallen off and she needed suctioning. I went over to her and reached down to put her valve back on when I noticed that her trach tube was just hanging by it's straps, and not even in the hole into her trachea. I freaked out, looking frantically for her emergency trach kit to put a fresh trach out and I was running around like a mad woman due to how I had been trained to react when the trach was plugged or had fallen out. The whole time, Sydney is just standing there, looking at me, carrying on as normal and didn't show any signs of having a hard time breathing. She went over to her toys and continued playing and even went over to the tv to watch. I finally found all the supplies and raced over to put a new trach in...she was fine the whole time. This made me wonder if she really needed the trach at all...
Our next visit with the ENT was in the office in early May. I told the ENT about the incident with Sydney and removing her shirt. He then told us that some kids can breathe without having full recovery of their vocal cords. He said maybe that was the case with Sydney and that maybe her cords aren't going to heal but she will be able to breathe with them as they are now. I asked how we'd test for something like that and he told me they would put a smaller trach tube in and cap it off so that she could breathe thru her nose and mouth around the trach tube. It sounded like this is what his plans for Sydney were. She was scheduled for Surgery at her next visit.
Sydney's next scope was scheduled for May 21st, 2002. At this scope, the doctor did in fact change her to a smaller trach tube and did give us caps to take home and try. This time when he came to the waiting room to talk to us, he told us that again he didn't see a whole lot of improvement and again we should continue to wait. He told us to try capping her at home to see how that goes, but he didn't think it would work real well. He said that she still only has minimal movement in her vocal cords and she may be able to breathe without the trach for a while as long as she was not working hard. As soon as she is more active and/or worked up, it would be hard for her to breathe. We went home and tried the caps and just as the doctor suggested, she does fine for a while, but when she has to cry or breathe harder, she just can't breathe in fast enough to catch her breath. This definitely showed me that she's not ready to have her trach removed right now.
Here is Sydney's 2nd birthday picture:
Last week, (June 14, 2002), we decided that we are tired of the 'sit and wait' course of action and we wanted to seek a more proactive approach toward having Sydney's trach removed. I contacted Dr. Cotton's office last week, just to ask him some questions about Sydney's condition and what his recommendations would be. Dr Cotton is a world renowned specialist in children's airways and we decided getting a second opinion by one of the best would be the best thing for Sydney at this point. I was pleasantly surprised to learn that Dr. Cotton himself took the time to call me back personally and answer all the questions I had for him.
I learned many things from my conversation with Dr. Cotton. He said he normally considers surgery for kids around the age of two. He said that we could do one of two things, one being to wait it out and we'd more than likely need to wait a LONG time and her vocal cords may still not heal. The other option is to have the surgery in which one of her vocal cords would be tied back so that she'd have an adequate airway. The surgery will leave Sydney's voice at 85% of it's strength...meaning that the tone of her voice will remain the same, but the force in which she can make sounds will only be 85% of what it is now. The doctor also said that she'd be a little bit 'breathy' when she talks.
I mentioned to Dr. Cotton that Paul's sister recently learned that she also has vocal cord paralysis, but that her vocal cords are frozen in the open position as opposed to Sydney's being frozen in the closed position. I asked if this condition could possibly be a hereditary thing and he said that he has had 3 or 4 families in which the vocal cord paralysis was hereditary. He asked a few questions about Paul's sister, like how long she's had this (forever) and if she sounds 'breathy' when she talks (she does). Based on his reaction, it sounded like it's possible that Sydney's condition is hereditary.
The first step is for Sydney to go in for a scope while she is asleep and while she is awake. These scopes will be done during 1 trip to the OR and will not require an office consult prior to the scope. I was impressed that they were willing to do the scopes without an initial office visit (as they require here in Pittsburgh). They must realize that people travel from all over to see him so he tries to minimize the number of trips to Cincinnati.
Once Dr. Cotton does the scopes, he said it takes 3 days to schedule an operating room. He said we could stay in Cincinnati awaiting our surgery date, but since we live so close, we'd probably rather just go home and come back. The surgery lasts about an hour. Sydney will have to stay at Children's for 3 days after the surgery. I had previously heard that after this surgery, Sydney would need to be paralyzed and in a coma-type state while she was recovering, so I asked the doctor about that. He said that wouldn't be necessary because she will still have the trach in after the surgery. I also asked who would be doing the surgery. Dr. Cotton replied that he would definitely be doing the surgery.
I then asked how long after the surgery Sydney would need to have the trach. The doctor said that he'd send her home for 6 weeks and during that time we would need to cap the trach so that Sydney breathes entirely thru her mouth and nose and not thru the trach at all. She needs to be capped night and day for a period of 1 month without any problems before the trach can be removed.
I also asked Dr. Cotton if I needed to have copies all of Sydney's medical records forwarded to him prior to the surgery. He said that wouldn't be necessary based on what he learned from talking with me. Although we don't plan to continue treatment with Sydney's ENT here in Pittsburgh, we really didn't want to tell him that we were going to Cincinnati just yet.
After talking with Dr. Cotton, the surgery scheduler called me to make an appointment for Sydney. They are scheduling now for late July or early August, which is about the same time frame that Sydney is supposed to be scheduled for another scope here in Pittsburgh. The only difference is that Dr. Cotton will do the surgery and she could potentially have her trach out in a month or so after the surgery where the ENT here in Pittsburgh will do the scope and if there is no additional vocal cord movement, he will apologize that he doesn't have better news for us yet and ask us to come back to his office in another 4 or 5 months.
At this time, we do not have a date for Sydney's scope and/or surgery in Cincinnati, but should have one any day. Hopefully my next update will bring some more positive news that we are getting closer to having the trach removed.
Here is are a couple of pictures of Sydney from this summer:
On August 21, 2002, Sydney was scheduled for an initial scope and evaluation with Dr. Cotton and his team in Cincinnati. We traveled to Cincinnati and Sydney was scoped by Dr. Cotton and Dr. Putnum (at the same time). Dr. Putnum is a gastroenterologist who wanted to check Sydney for reflux. She'd been on reflux medicine when she was a newborn, but we weren't really sure if she still had reflux or not. She doesn't show any signs of it at all. Dr. Cotton did the scope and said everything looked normal with her vocal cords. He said they were definitely paralyzed and not moving too much at all. Dr. Putnum told us that at the bottom of Sydney's esophogus there was what he called furrowing, or some irritated tissue in the esophogus just above her stomach. This indicates that she either has reflux now, or that the tissue is a result of reflux in the past and it just didn't heal. He told us that he took a culture and sent it to the lab to have it analyzed to determine if the reflux is happening now. He said that depending on the lab results, he'd decide how we were to proceed.
We were scheduled to have the vocal cord lateralization surgery on September 4, 2002, but due to the reflux issue, we weren't sure if the surgery would be postponed or canceled. Dr. Putnum told us that the reflux, while it doesn't seem to be an issue for Sydney right now, it might become a larger issue once she has the vocal cord lateralization surgery. Because the surgery blocks one of her vocal cords in the open position, the reflux will be able to get into her lungs much easier after the surgery. We got the lab results and learned that Sydney does currently have reflux. We were not sure what that meant in relation to the upcoming surgery. We knew that Dr. Putnum had told us when we met him that if the reflux was real bad, Sydney may also need to have the surgery where they tie up her stomach so that nothing gets out at all. This would make it so she could never throw up. We weren't sure if this stomach surgery had to happen first or later. After he reviewed the lab results, Dr. Putnum told us that he thought we could proceed with the surgery and that we'd just monitor Sydney after the surgery. He put her on Prilosec, an acid reflux medication, and said that it would not stop the reflux from happening, but rather make what is coming out of her stomach non-acidic so that it would stop irritating her esophogus. After the surgery, if Sydney continually gets pnuemonia or respiratory illnesses, then we need to address the reflux issue.
Here is a recent picture of Sydney just before she has her surgery:
On October 4, 2002, Sydney had her vocal cord lateralization surgery. She went in to the operating room around noon and the surgery lasted about 2.5 hours. I guess this is normal for this surgery but for some reason, we thought it was only going to take around an hour. The doctors came out after the surgery and told us everything went great and that once she was awake in the recovery room, we could see her. We waited probably another hour and a half for them to call us back to see her but they never did. I finally went to ask the receptionist if we could see her and she called back to check. Evidently, Sydney was still sleeping and they were in the process of moving her to a back part of the recovery room so that's why they didn't call us. We finally got to go in to see her and she was still sleeping on and off. She'd wake up when the nurses came in to take her vitals, cry, and go back to sleep.
Due to the new wing in the hospital not being open yet, we had to spend the night in the recovery room. The nurses there were really nice and gave me a bed to sleep in while Paul slept on a recliner. The bad part was that Sydney needed suctioned about every 20 minutes all night long. I am not sure if this was a result of the surgery or if she was catching a cold, but she was really congested. I had to be the one to get up and suction her because she'd wake up and see the nurse suctioning her and freak out. So, I didn't get a whole lot of sleep that night, but I am not complaining.
They cut Sydney's neck just about the trach to do the surgery. The cut was just about the length across her neck as the trach is. They also put in a drain which looked like a rolled up piece of gauze. The nurse had to continually change her dressings over her cut and the drain, which Sydney didn't like at all. The doctors didn't use stitches on the cut. They somehow glued it back together. I am no doctor so I do not know the medical term for what they did. The drain was removed 2 days after the surgery.
The next early afternoon, they had a room for us in the new wing of the hospital and we were moved there. The room was brand new and it was private and had it's own bath and shower. It had a nice size fold out chair/bed for us to sleep in. Sydney enjoyed the fact that we were sleeping right next to her.
Sydney had to stay in the hospital for another 2 nights while they observed her. The entire time, she was very congested, almost like she had a cold. I kept asking if that was normal and nobody seemed to know. The nurses gave her tylenol with codeine for the pain and she seemed to be okay with that, but still very congested.
The worst part about the whole thing, is that immediately after the surgery, Sydney could make no sound at all. Prior to the surgery, even without her speaking valve, she could make some sounds around her trach. After the surgery, she couldn't even make a small squeek. I was worried that we had done the wrong thing. In fact, Sydney went back to doing some sign language. That was something she hadn't done for over a year, since she started being able to wear her speaking valve.
Sydney was released from the hospital with orders to not wear her Passy-Muir (speaking) valve for at least 2 weeks. For those 2 weeks, Sydney did not seem to be getting any better, so I took her to her pediatrician to get her on an antibiotic. She must have had some sort of virus or infection because after about a week, she got better and didn't have all the secretions like she had right after the surgery. It wasn't until about 3 weeks after the surgery that we could use the Passy-Muir valve again. Little by little, her voice continued to improve. It started out at a whisper and slowly she was able to add some tone to it. It's very soft and not nearly the same tone as it was prior to the surgery, but that is to be expected. Dr. Cotton said that her voice would only be about 85% of the strength after the surgery, but I forgot to ask how long it would take to get to that point.
At about 4 weeks after the surgery, I tried capping her trach to see how she'd do. She was okay when she was not real active. She could tolerate it just fine. The whole time though, she would inhale and make a small stridor sound. And, at one point, she got upset and started crying. She just would not settle down until I removed the cap. She kept telling me that she needed suctioned and tried to cough off the cap as she does when her trach is plugged. I was very worried thinking that possibly the surgery didn't work and that we'd have to do something else, or that worst case, she'd have to wear the trach forever.
On October 11, 2002, Sydney had her 6 week follow up visit. We got to see Dr. Cotton for a brief time before the surgery. He asked how she was doing and how her voice was. I told him that her voice was still soft and he told me that it could take up to 6 months to heal. It will never be as strong as it was, but in 6 months, it should be as strong as it will be. He also asked if I had tried capping her and I told him about the incident 2 weeks prior. He said they'd take a look and see how everything was healing. They give us color pictures of what they see each time they do a scope. Below are pictures of her vocal cords before and after surgery. You can really see the difference in her airway. Here are her vocal cords before surgery:
And, here they are after the surgery:
After the scope at this visit, they capped her trach. She had to stay in the hospital for 48 hours with her trach capped to make sure she was breathing okay. They kept close watch over her and monitored her with a pulse-ox machine as often as they could get her to cooperate. Her oxygen level was 95% or better the entire time, even when she was active. Perfect would be 100% so 95% is very good. Once they were happy with how she did with her trach capped, they sent her home. Our orders are to keep her trach capped at all times, night and day, unless she's in distress.
We've been home for a week now and she's not needed to have the cap removed even once. Even though she still has her trach, just having it capped makes a world of difference. She's almost like a normal baby again. She doesn't need suctioned, we don't need to hook her up to all those machines and compressors at night, no cleaning all the medical equipment, it's just wonderful. We still carry her suction bag everywhere she goes in case of an emergency, but we haven't used it since she's been capped. She's been doing great with her trach capped. She has been very active (running around and playing) and we can hear a bit of stridor, but not too bad. The nurses at the hospital also heard this and didn't think it was an issue due to her oxygen level measuring okay. She also doesn't show any signs of distress when she cries.
Her voice now continues to get stronger. It's still soft and a bit deeper than it was before, but I have to think that having a soft voice sure outweighs having to wear a trach the rest of her life. If it gets no better than it is right now, I'd be happy, but it is expected to improve.
October 27, 2002, here is a picture of Sydney's scar just above her trach from her surgery. It's healing nicely, but it's still visible as you can see from the photo. We aren't worried though...she's young and it will fade considerably by the time she is concerned about it.
And another picture of her at a halloween party:
Sydney is scheduled to go back to the hospital on November 21st. They will do a sleep study that night and then a scope in the morning. If all looks okay and the sleep study results are okay, they will pull the trach and keep her for 48 hours again for observation. If no major problems, we go home trach free! I can't believe we are finally moving forward...it feels so good! I am so hopeful this time. So many times in the past I have gotten my hopes up and then been shot down and crushed when we came out of our appointment with nothing more than another appointment. She's doing so well with the cap, I can't imagine there'd be a problem when we go back.
Thank you all for your thoughts and prayers as we go through this, I can't tell you how much we appreciate them all. For any of you out there actually considering this surgery for your child, a friend of mine found this interesting article on the surgery and Dr. Cotton if you'd like to read it:
Please Click Here to Go to the Article
Here is a picture of Sydney that won 3rd place in a photo contest that the passy muir company had. They judged kids wearing passy muir (speaking) valves and awarded prizes. Sydney won $500 for this picture and they may even use her picture in their advertising! She wasn't really wearing the valve at this point, but we put it on her for the picture so she could enter the contest.
November 24, 2003 update. We arrived at the hospital for Sydney's appointment around 7 and were admitted to the sleep ward to be prepared for the sleep study. A sleep study specialist (nurse of some sort) came in to Sydney's room and for 45 minutes applied electrodes to Sydney. They used a plaster-type material (like they use in casts) to connect 7 electrodes on various areas of her scalp. Another 5-10 were taped on her neck, cheek, eye area, forehead, chest, belly, etc. Sydney screamed bloody murder the entire time. I can't say that I blame her either. It was the worst ordeal she has gone through since she got her trach. The specialist finished around 8:30, and Sydney was asleep by 9:30, exhausted from the screaming. The first picture below is after the nurse finished hooking Sydney up to all the electrodes (notice she was not happy). The second picture below is Sydney finally asleep after she was all hooked up to the machines for the sleep study.
The specialist then came back in around 6 AM and started removing them. She had to use nail polish
remover to dissolve the glue on the ones in her hair and pulled all the tape off the ones that were taped on. Once again Sydney was not happy, but the removal took only 20 minutes. When this was done, Sydney went back to sleep. The problem was that the "stuff" that was used to secure the electrodes to her body and in her hair remained in mounds as it had hardened (just like a plaster cast). This was not fun getting the rest of it off of her and of course that was our job.
She was discharged from the sleep study room around 10:30 AM, and then we went to same day surgery for
her scope. Several of the nurses popped their heads into Sydney's preop room to say hi to her. They remembered her from her previous visits. They
were running late and did not take her into surgery until 12:45. Nothing remarkable about this scope, she'd been thru it so many times before. When they were finished with the scope, we met with one of Dr Cotton's assistants at about 1:10. He said the scope showed that everything looked great and that they were going to take the trach out based on the scope results and the fact that Sydney had been capped for 6 weeks w/o any problems. They did not have any sleep study results when they did the scope, though they had hoped to have them before they made the decision to decannulate her. We went back to recovery about 30 minutes later. Sydney was awake and fine. She didn't even have an iv this time. We also realized that the recover area was jam packed with children. There weren't any rooms ready to move the patients to. We remained in recovery until after 8 PM. However, at 5 PM, one of the ENT's came to Sydney's recovery "room" and removed her trach. Below is a picture of her holding the trach and looking at it.
After talking for days about the dr taking out her trach, Sydney's response to the attending when she asked Sydney if she wanted her trach out as "no....". It was no different that what Jodi and I did whenever we changed it, except instead of putting a new one back in, they taped a piece of gauze over the hole and
said that Sydney should push on the gauze when she talked to help the hole to heal quicker. We tried to get Sydney to do this, but she wanted no part of it. At this time, we still had not seen Dr. Cotton which was odd. At all prior visits, we had seen him before and/or after the procedures. Then at about 7 PM, we saw him in the recovery area. He had been doing surgeries up until that time. He came in to see Sydney. He told us that she was doing great and that we needed to schedule another appointment for
mid-January. He needs to do another scope to make sure that no granulations have grown in her airway. These may grow at the area around the trach opening. We asked about the hole, and he said that if it is going to close, it would do so in 48 hrs. We were shocked thinking that it would happen this soon. He said if it doesn't close in that time, and hasn't closed by the time we go back in January, we'd discuss what to do at that time.
Sydney had to stay in the hospital for monitoring for 2 more days to make sure she was okay. After staying all that time and having no problems what-so-ever, the doctor discharged her and said that he wanted to scope her again in 6 weeks. Below is a picture of her stoma (the trach hole) and the scar where they did the surgery 6 weeks ago. This picture was taken as soon as we got home from the hospital.
January 18, 2003: Sydney's requested arrival time at the hospital yesterday was 10AM. We arrived at 10:10. We weren't in the playroom for 10 minutes, and the nurse came to take us to pre-op. We weren't in the pre-op room 5 minutes, and Dr Cotton popped in
and said he was ready for Sydney. The pre-op nurses rushed to get all of their tasks done, and then we went off to the O.R. Jodi was with Sydney until she was out, and then Jodi came out with me to wait. We were called into 1 of the post-op conference rooms in less than 20 minutes. The dr (a resident who we've seen the last 3 post-op sessions) said that everything
looked great. He gave us another sheet of photos of Sydney. He said that if they had a perfect post-lateralization photo in their offices, Sydney's
current photo could be used for it. He said everything looked great and that he didn't see any problems. He then told us that we would have to come back in 6 months to get the hole closed. Jodi
immediately asked if that could be accelerated, due to Sydney's love of swimming. He said sure, and we will now be going back sometime in May to get the hole closed. We were called into recovery about 10 minutes after we saw the intern. Dr Cotton stopped to see us while we were in recovery to tell us that the hole-closing will require a 2-night stay. We were then
discharged from recovery after about 15 minutes. It was 12:10 when we got down to the hospital lobby. Barely 2 hours had passed! This was the fastest trip ever!
February 22, 2003. Below are some recent pictures of Sydney, the first one is her playing with the old medical tubing she used to have to use all the time. I had my camera and she asked to have her picture taken.
The next picture is a recent picture of what her stoma and scar look like. They are healing nicely and should be completely gone in a few years. The stoma hole is not completely closed yet. We have an appointment that is actually sooner than we thought, in April to have the hole closed.
April 18, 2003. We took Sydney back to Cincinnati to have the hole in her neck closed for good. This procedure involved the doctor taking her in to the operating room and while under anesthesia, the doctor did what he referred to as 'boar out the hole' (yuck). It sounds so disgusting when he phrased it like that but what he did was trim off all the scar tissue around the hole that was preventing it from healing. The procedure took about 45 minutes and we were called into the recovery room before she even woke up. We were a little surprised to see that when she was in the recovery room, the doctor had put a small trach in the hole...he said it was to make sure she had an airway while she was under the anesthesia. It was funny to see this, as it felt like we were going back in time to when she did have her trach. But, as soon as she woke up, the nurse pulled out the trach and bandaged up her neck.
After the surgery, the hole in her neck was significantly larger than before she went in for the surgery. She woke up and was crying a bit and tried to talk and found that all her air was escaping thru the trach hole and making it hard to make sounds (just like when she had the trach). She cried and several times told us 'I can't talk'.
Sydney had to stay the night in the hospital and for a few hours after the surgery, she was still groggy and just laid around. They left the IV in her arm for a good several hours, even though she was eating and drinking well. Finally, when the doctor made his rounds at 6pm, he said it would be okay to have the iv removed...good thing too because that is what made Sydney the most upset!
After they took the iv out, she was pretty much back to normal. She kept telling me that her trach hole was making funny sounds (since there was only minimal air passing thru it before the surgery, the air passing thru after the surgery was quite loud).
When we woke up in the morning, the nurse told us that as soon as we could 'get' Sydney to eat something, she was free to go. We both laughed...Sydney has NEVER had a problem eating and we never have to force her to eat! So, she ate and we left.
The trach hole remained open for most of the week. At first I thought it was strange that they don't do anything to the hole after removing the scar tissue...they just let it heal on it's own. I was concerned that this wouldn't work either since they told us that once they took the trach out, the hole would close on it's own and so far, before the surgery, it hadn't.
I remember looking at the hole on Wednesday or Thursday and it was a gaping hole...and I wasn't allowed to examine it too closely because she wouldn't let me near it. I wasn't sure how long it was going to take to close. Then, on Good Friday, somehow I got a glimpse of the hole and saw what I thought was a scab over the entire hole. I asked her to show me and when she did, it definitely looked like it was closed.
That night, I decided to give it a little test. Sydney and Brooke got in my 'Hop Tub' (Sydney's name for the jacuzzi tub in our master bath) to get a bath. I took a little water and splashed it on the hole in her neck...normally this would have made her cough like crazy...and nothing happened. So then, I dumped a cup of water over her head...again this would have all run in the hole (before it was closed) and cause her to cough...again nothing! THE HOLE IS CLOSED! At that time, I turned the jets on in the 'Hop Tub'...I thought Sydney was scared (by the look on her face) so I turned them off right away...she complained and wanted them back on. She was SO excited to FINALLY be able to be in that tub with all the bubbles going...something she'd never done before!
After playing in the tub for a little while, I put her in the shower to wash her hair. I have a glass door shower and for such a long time, she'd see Brooke in there and cry because she wanted to come in. She was just in HEAVEN being in the shower looking out at everyone else for the first time in her life.
I finally have a normal healthy little girl back...and I can't wait for swimming season this year. She will be so happy to be able to do what all the other kids do this year! Her voice is a bit soft as a result of the surgery she had on her vocal cords, but all in all, I think it was the right decision.
May 2003. Here is a picture of Sydney just a few days before Mother's Day.
And here is a close up picture of her surgery scar and her trach hole a little more than a month since the surgery to close the hole.
And here is a picture of her modeling her big sister's new dance team uniform!
Last Updated May 25, 2003
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