Sawyer's Story

Sawyer was born July 22, 2010. He was born at 38 weeks and weighed 7 lbs. 4 oz. While I was pregnant I had marginal placenta previa that corrected itself before 30 weeks. I also went into pre-term labor at 32 weeks, my labor was stopped with Terbutaline. I also had something called symphysis pubis dysfunction, which happens when your body produces too much relaxin. I want to bring these things up because I am longing to find a genetic or prenatal similarity with other parents of children with this congential problem. I was also leaking amniotic fluid for about a week. I was 5 cm when I went in to be induced at 38 weeks, when they broke my water, barely any came out. When he was in the womb I felt him breathing (my mother felt it too) it was the weirdest thing ever. I could feel him doing a breathing movement that was like quick breathing in and out. He only did it one time after being born. The nurse saw it and said his heart rate was fast but brushed it off as nothing, I doubt she wrote about it in her notes. We left 25 hours after his birth. I just knew from the get go he had it too. I just had a feeling and he sounded weird. At his first check-up at 1 month old on base we were assigned to none other than the Dr. that mis-diagnosed Declan for 6 months. At the appointment she listened to Sawyer and said he sounded completely fine. This time I was an advocate for my child. I demanded that we get an appointment immediately with ENT, and she agreed (to my surprise) to get us a referral. Change of subject for a second, she also helped us diagnose that he had a hemangioma that had just showed up a couple weeks before. I thought it was a scratch above his lip but it just kept getting bigger and redder. Now back to the story, within 2 days I got a phone call from Arkansas Children's Hospital (ACH). They got us in within 2 weeks. I was stunned because with Declan it took from Sept-Nov to be seen by ENT. The lady said they rush cases where the parents claim the children are aspirating. I had him on thickener from week 2 BTW. Just by listening to him, I knew he was aspirating on Nectar thick and below. I put him on Stiff Nectar without consult from the Dr. We were seen by Declan's ENT Dr. when Sawyer was 2 months old. I was there by myself because my husband had just started a new job and was not allowed to miss work. They inserted the scope into his throat, (this time I knew what I was looking for) I see his obvious laryngomalacia. Then they move to the trachea and he went completely silent. Actually there was an eerie soundless noise. I just can't even describe the sound. It was like a fish out of water, he just immediately stopped screaming and it was like a dying sound, it was so unbelievably scary. I had never heard anything like it before. They ripped the scope out and this time (since he knew me) I was allowed to stay in while they chatted. After the scoping my son just laided on me. He didn't even cry anymore. It was just one of those "not okay" moments in my life. I knew it wasn't good. As they talked, they showed me each thing they were concerned about. According to the Dr. he had mild laryngomalacia and he also had severe tracheomalacia, there was also a large red spot inside his airway near the opening of his trachea. They believed it was a possible hemangioma. They wanted to put him on prevacid and monitor him for the next few months. They also scheduled a swallow study for the following month and advised me to put him on Nectar thick consistency. (I did what I thought was best and kept him on Stiff Nectar). October 2010, Sawyer's swallow study came back completely normal. He didn't even have penetration! This should be a lesson to everyone getting these tests done! It is a moment in time. I KNEW what was happening and luckily for Sawyer they believed me. However, it was their recommendation medically that he be on Nectar thick. Privately the speech pathologist told me to keep him on what I believed he needed to be on. Over the winter months we had 4 cases of Croup and 3 cases of RSV. During this time, I could hear him breathing across the room, his wheezing was horrible. Most of his wheezing was upon exhalation. He would also squeak breathing in (stridor) and it was due to laryngomalacia. In bet. our first visit to ENT and the Swallow Study, Sawyer had his first "SIDS" moment. While driving home one day, Sawyer's passy fell out of his mouth, I was driving my husband's truck that day and couldn't reach it while driving, like I can in my van. I was 1 mile from my exit when he started to cry. When he cries he tends to scream bloody murder like he's hurt. I was in the front consoling him with kind words and letting him know we were only 1 exit away when all of a sudden he went silent (just like he did in the ENT office). I thought at first he was just doing the "holding the breath" thing like a lot of kids do, but he never stopped. This was right when I had reached my exit home. I pulled over to the side of the road and got out. I open his door and he's just frozen. Not attempting to breathe, nothing, he's just stuck in the screaming pose with no air coming out and no movement, he wasn't even flailing. His mouth and eyes were whitish/blue and his cheeks are red. I frantically try to get him out of his seat, I'm shaking him as I do it. He finally took a breath, but once again, just like in the ENT office he starts breathing again but doesn't even cry, he just was catatonic. The ENT doctor believes this is nothing to worry about and since it had only happened one time, I should not be concerned, he believed it is what many children do when they cry (holding their breath). This was SO DIFFERENT from that, but he scheduled me a sleep study just to shut me up. The Sleep Study was scheduled for December 2010. Sawyer slept with me from birth so I could monitor him. I knew he was not breathing well at night especially and I asked for an O2 monitor. The ENT Dr. said that those machines are so bad they go off all the time for no reason and freak parents out. I explained that I don't even sleep because I have to have a hand on him all night long to make sure he's breathing. One night it happened again. He had a specific noise (stridor) he would have while sleeping. It was almost like a little mouse squeak or sometimes (if he was sick it was a wheeze). I would listen for this, while keeping a hand on his body at all times throughout the night. He was making the breathing noise and all of a sudden it stopped. I immediately woke up and started touching his body trying to see what he was doing. But nothing happened. I shook him a little, nothing, I could see his face in the light from the moon and it was the weirdest thing. You know when you see people in the movies pretending to drown? How they struggle to breathe and then go into a peaceful happy place. He was calmly looking at me and not attempting to breathe at all. At this point I'm freaking out, I start screaming for my husband to wake up and flip on the light. We continue to try to do everything to make him breathe and finally he takes a breath. He didn't cry, didn't attempt to breathe nothing. He was just fine, like he forgot to breathe for a minute and then we triggered something in there to help him remember. It was one of the scariest moments of my entire life. My husband had finally witnessed it too, and he was freaked out. I now had someone else to vouch for me. December 2010's sleep study proved my claims are true. Sawyer was having about 20, 10 seconds or longer obstructive apneas every hour. He also had several central apneas (which btw is where the brain does not send signals to muscles that help you breathe). There were several other findings but I just can't remember everything. (Declan's story has many missing parts as well). Now that the Dr. had proof of his apneas we were scheduled for a supraglotoplasty February 2011. Also in December I took him off the prevacid because he never threw up, he was on it for precautionary purposes and it was causing him to have too much yiest in his stool. I made this decision with my PCP. This was around the same time Declan got the stomach bug and was hospitalized. Sawyer got it next and we were hospitalized for 5 days in January 2011, 1 week after Declan. I was in the hospital for 10 days straight. I was pretty much at my wits end. Especially because no one would tell me anything about Sawyer. I kept asking why we were there and no one would answer why. It was horrible. Surgery day arrives, Feb. 2010. I knew he had some kind of respitory thing going on just wasn't sure exactly what it was. The Anesthesiologist was seriously Satan. She was against going in for his surgery due to his respitory problem, I felt this was as good as it was going to get considering he had already had croup and RSV so many times during the winter months. She was mad at me for taking him off his prevacid without consulting the ENT people, but once again, I am my child's advocate. He doesn't have reflux and never has, the prevacid was causing him to have problems with digestion, I made a decision along with my son's PCP on his medication and I knew it was the right one. She was outside telling the intern that I was a "non-compliant mother" when I opened the door and confronted her. I said, first of all, "you don't know me after 1 minute in a room with me, second, I am not a non-compliant mother, I am an informed mother, which I'm sure you are not used to dealing with and I know what's best for my child more than anyone else in this hospital." She spouted off again, that I was "non-compliant" for risking my child's health and I said "whatever lady, they haven't even diagnosed him with reflux," and I shut the door and let the intern deal with her. He believed it was a good idea to continue with the surgery even though Sawyer had something going on with his breathing. So I signed off on his life and waited for the regular Dr. but since they ran out of time due to the Anesthesiologist's fit, we never got to speak to the Dr. I would've reminded him that he needed to check his ears for tubes (had we gotten the chance) but we didn't even get to go over the surgery (not even with the intern) due to the time restriction. 15 minutes later his surgery was over and a success! He also was confirmed to NOT have any signs of reflux. The Dr. forgot to look at his ears though and he had already had 5 ear infections so far in his life. More than enough in a 6 month time period to require tubes. Sawyer seemed to do much better almost immediately after. I saw a big change in his breathing problems and he seemed to start thriving more and more. I was very happy with his results but at night he still had apneas and I could always tell when he had breathing problems. You can hear it when he cries, it sounds kind of like he can't get a full breath, it's like he's only getting a half a breath instead of a full breath. We were sent to pulmonary after I requested a consult. Pulmonary prescribed atrovent and we have seen wonders with this medication. It truly does help him when he seems to be having trouble breathing. By June 2010, he had 10 ear infections, 4 cases of croup, 3 cases of RSV, and bronchitis. According to them he had never had pnemonia, but I believe some of those "RSV" cases were acute bronchitis (I am very positive). He was never tested for RSV or croup, they just diagnosed and since he had tracheomalacia they assumed many of the sounds they were hearing was due to tracheomalacia and didn't do xrays?? Even after I requested them! I tried to be an advocate, but had they given him albuterol it would've been very bad for him, so I'm glad they never gave him a breathing treatment. But the healthcare here is horrible, I am very sad for my baby, I wish we could be somewhere else with a better healthcare system. He was scheduled for tubes, adenoid and tonsil removal, scoping of larynx, trachea, and upon request broncho tubes, and he also was being tested for a cilia biopsy (also upon request) to check for a rare genetic disorder. 2 weeks before the surgery we were scheduled for a new swallow study and ENT visit. The swallow study showed that Sawyer has deep penetration every drink past nectar thick. He was perfect at Honey. So they recommended Honey consistency. They told me they didn't want to push him to aspiration because it was obvious he would aspirate if we pushed him further. When we went in for our ENT appointment the Dr. comes in with a big smile and says "YES!! We beat it!" I'm like what are you talking about? I was just validated that I have been doing the right thing keeping him on thicker than nectar thick thickener and you say we beat it? He said well, "he didn't aspirate and that's really good." I go, yeah but he had deep penetration and if you remember the first swallow study came back completely NORMAL! What an idiot, so I was pissed now and he looked Sawyer over. As he looked him over he said, he looked really good and now believed his tonsils had gone down enough to not remove them during the surgery. My response was "we're having the surgery for the tonsils." His response was, "I always find it's harder to talk parents out of surgery than to talk them into surgery. He then tries to guilt trip me by saying that there is a 1-3% chance of bleeding...which BTW was the same thing he used to talk me into Declan's surgery 2 years before." My point was that just because his tonsils are not ginormous now that he's FINALLY not sick for the first time in his life doesn't mean they won't be back to being huge in a few months when winter hits, and then we'll be back in the OR again risking his life and causing more pain again. After consulting my husband, we decided it was best to remove it all. My kids have tended to be in the 5-10% chance it's going to happen range and we just didn't want to risk it. I asked about our pulmonologist scoping him for the bronchoscope and he told me "Pulmonologists are never present for scopes and typically doesn't want to do it, but I will ask him." (I will find out next month if that was a lie or the truth...the hospital refuses to allow me to contact the pulmonologist's nurse). Back to the story...I was told the chances of residual laryngomalacia was 10-20%, this was during an appointment for Declan because I believe he has residual laryngomalacia, I never discussed this with the Dr prior to the surgery because Sawyer had just had the supraglotoplasty surgery in February and they claimed they got it all. July 11, 2011 this time everyone came in and talked with us before surgery. The intern, the Dr, the Anesthesiologist, and I went over everything that was supposed to be done. However, they were running about an hour late on surgeries. Typically, when the surgery is over the Dr. meets us in a consult room after the surgery and brings pictures and discusses what he found. This time they sent us directly back to Sawyer. As we approach his bedside (my husband was able to be off for his surgery this time) we come in to him having a respitory problem. He was making his typical tracheobronchomalacia sound (which is rare unless he's sick). He then immediately began choking on his own spit, his oxygen dropped to 84-87 and he was sputtering and flailing. My husband immediately lifted him off his back and we are demanding something to suction him out. The nurse goes as slowly as possible finding the suction machine supplies and suctions him out reluctantly saying she can cause damage to his throat. I just wanted a baby nasal suctioner not an automated thing. Of course you don't want to cause him to bleed but he can't live if he can't breathe. After we get him breathing again (he never went higher than 95) I held him on my chest rocking him and consoling his pitiful cries. As we sat there talking with the nurse, she explained that right after surgery he went into respitory distress and they gave him albuterol. I don't know if you remember me mentioning this above but you never give children with this problem albuterol because it causes the airway to become more floppy making it collapse more than it already does, which sounded exactly like what was happening to Sawyer. So I alarmingly say, "I hope you didn't give him albuterol, that's what's causing this." She quickly changed her story and said that they gave him his appropriate medication atrovent after surgery. I need to get the records to verify, but if they put my baby into respitory distress because of lack of attention, I am gonna sue! I requested that the Dr. come to the bedside and give us our results from the surgery. Now I mentioned before when your in the situation it's almost surreal. You care most about what you are finding out and that your baby is okay, it took a little while for me to register what he missed. First thing he says to me is that Sawyer had only "mild laryngomalacia" that should correct itself on it's own. (that wasn't just mild laryngomalacia that was RESIDUAL laryngomalacia) He didn't correct his laryngomalacia and now I know he still has it and will continue to have it. He had forgotten he had already done the surgery on it?? UNREAL... Anyway, he claimed Sawyer's trachea was mild and his broncho tubes were confirmed to have moderate-severe bronchomalacia in the left broncho tube. He didn't mention the cilia biopsy and my husband found out the following day we were supposed to find out the results sometime this week. His O2 stats continued to stay 95 and below until 2 hours after surgery. He then remained at 99 until he slept. He was sent home after he consumed his 4 oz. of apple juice around 11am the following day. BTW, you might be wondering why we have stuck with this doctor for our ENT needs. It's because he has a reputation as the BEST DOCTOR in Arkansas. And we have tried to go to other Dr's with Declan only to have them turn us away without even looking at him because they were either taught by this Dr. or they were friends with him and think he's GOD. We have no choice, he's the ONLY one and tricare (military insurance) only gives you so many second opinions. We're maxed out and the military will not let us go out of state. So we're stuck with moron. So for the past week I've been dealing with a baby that now has been having at least 2 blue crying spells daily since his surgery (he's passed out 1 time falling forward onto his head), I can also hear him not getting deep enough breaths (he sounds wheezy), not to mention the pain. The poor thing doesn't want to eat, drink, or anything. He lays on me and whines all day. He slept 20 hours today, almost two weeks after his surgery. He did eat a little more today and I have him on pediasure to help boost his calories. He really likes it and I'm glad, he won't even take his formula anymore, at least I know I can help boost his calorie intake. His first birthday is tomorrow and I can't believe he's already 1. He is such a joy in our lives. I want to know why this has happened to our family and try to find a link with other parents so that we can pinpoint what causes this problem. Because the Dr's aren't giving me answers. I want to know if there are research studies out there on this and I want to know what other parents have been told by their Dr's. I've heard not very many people have more than one kid with this problem, so I hope it's not genetic, but I want to know for sure, most of my information comes from an obviously tainted source or the internet. I want to reiterate that I believe thickener has saved Sawyer from the problems like FTT (Failure to Thrive) like Declan had.