UPDATE ON SAWYER

Ok. Lets start with Sawyer. The last I updated his MRI came back normal, which I rejoiced about, but the MRI results might not be accurate according to the neurologist that graded his sleep study on 10-19-2011. First, the entire reason we had a sleep study was because I was "claiming" that Sawyer was still having breathing problems in the night even after multiple surgeries to correct his condition. Since no one believed me they asked if I was willing to do another sleep study to prove he was in need of a CPAP and O2 monitor which I have been asking for since Sept. 2010! I agreed and a month later we were seen in the sleep center. The results were worse than the first sleep study which constituted his first surgery (supraglotoplasty) on 2-16-2011.

Results: Sleep Study 10-19-11
Cent. Apnea
6-9 secs: 8
10-14 secs: 5

Obst. Apnea
>20 secs: 1

Obst. Hypopnea
6-9 secs: 31
10-14 secs: 46
15-20 secs: 39
>20 secs: 62

"His lowest oxygen saturation was 76% and was <92% for about 3.5 minutes of the total night. Although his oxygenation was ABNORMAL he did maintain his baseline avg. 97% oxygenation 94.1% of the the sleep time. The drops came with sequential events in REM sleep (particularly of a CENTRAL nature)."

"Actually, as the child fell asleep, he began to demonstrate periodic breathing, which was a mixture of central apneas, and central and obstructive hypopneas, but which were so irregular and difficult to identify that it was quite hard to score with numerous events lasting less than 6 seconds. Of those that were less than 6 seconds, only those which were most clear cut were scored. Thus the child's breathing pattern particularly in the first part of sleep was much worse than these number reflect."

"Sleep was disrupted by these numerous events. The great bulk of the central events were very short, but the hypopneas ranged as long as 53.2 seconds in duration. Overall, this study is more abnormal than the child's first study."

Recommendations:
"Consider reviewing with neuro-radiology this September's MRI to look at the cranio-cervical junction to evaluate for a Chiari I malformation. The report comments that the brain stem looked normal so that issue has likely been address."

May L. Griebel - Neurologist in the Sleep Study Lab - Arkansas Children's Hospital

So after months of asking for a CO2 monitor (still don't know if they will give me one or not) and a CPAP machine. They are finally getting us a CPAP machine and evaluation. This will happen on December 20, 2011. A full year from the time of his first sleep study and 2 surgeries later. He has nothing left to be blocking his airway (tonsils gone, adenoids gone, tubes in ears, & supraglotoplasty).

On another note. Sawyer received the RSV shot on 11-15-2011. So far so good. Everyone else in the family has been sick and he hasn't been sick yet! Really hoping this lasts and he's protected this winter!

MRI & CT SCANS

Sawyer's MRI has come back NORMAL!! YAY!! He's definitely not out of the woods for typical laryngomalacia, tracheomalacia, and bronchomalacia complications BUT he does not have any related neurological problems and we are very thankful for that! <3

Declan's CT Scan was a less exciting revelation. The Dr. believes that Declan has something called atypical TB. This is something that can form if you have a compromised immune system (which he does) and TB germs infest a certain part of your body. It is not contagious and the cure is immediate surgery (or it can spread to other organs) on the area affected, in this case it would be Declan's parotid gland. They don't know if it's in other organs already but he said that was rare... My first instinct is I'm freaking out! I don't dislike our ENT doctor as a person, I just believe him to be a very busy man that sometimes rushes through things and perhaps he doesn't pay enough attention to all the details. For a situation like this surgery that cannot happen and I feel like it's a big risk using our same Dr. for this surgery, however, it is the opinion of relatives, this Dr., and our PCP that this is something that cannot wait too long on and going out of state for a second opinion is not really an option. My fear is the facial nerve that can be damaged in this situation and the fact that he is leaning toward the riskier surgery (possibly leaving cells behind causing regrowth and having a higher risk toward the facial nerve damage to occur). He believes this thing is sitting on top of the gland. He also noted that it could be a cyst or granuloma. We have had blood tests done and it is not an infection or cancer! Thank GOD! He has said he can change his mind once he gets in there and take out the whole gland, but I will re-address my concerns on surgery day and probably try to push for the least risky surgery...I don't want to remove the gland unless necessary but he tends to forget and just do whatever is on the paper instead of making decisions in the OR...at least he's never changed his mind before during a surgery. I don't feel comfortable with this situation...I feel rushed and trapped but there is nothing I can really do...my husband, family, and Dr's are pushing me to do this...I want him better...just so scared for him...so much is at risk...just very stressed...

Declan's Tumor (Benign or Cancerous?)

Well...I've been sitting on this for almost two weeks...but I think it's pretty firm that we're dealing with a serious issue with Declan (my first LM baby). On Friday, Sept 2nd I noticed a "bump/growth" on his face from his jaw to the middle part of his ear on his face. It's a little larger than a quarter in width and sticks out a little but if you didn't know to look you might not see it...however if you see it then you're freaked. I called immediately after seeing it but it was around lunch time and it was the friday before Labor Day weekend. I wanted to know if I needed to go to the ER & the ENT nurse said it was non-emergent and we should wait until Tues. morning. The doctor looks at him on Tuesday and says there is a 90% chance it's a benign "mass" that is as large as his entire parotid/paratid (sp?) gland he also tells me I have the worst of luck with some of the rarest things a child can have. He then decides he's going to give him 7.5 ml of bactrim for the next 10 days to see if it's by some reason an infection and not a tumor and then we were to come back on the 27th if it's not gone and they will do scans. So we've gone a full 7 days of antibotics and no change in the gland it's huge. I read that fast growing "masses" are most likely cancerous! So I've been totally freaking out. Scrambling trying to get a second opinion and nothing is working out. We're trapped here in Arkansas unless we want to lose our house to get another opinion because Tricare won't cover anything out of state?? RUDE! Even if it's not cancerous I don't understand waiting so long to find out what it is. I get trying antibotics for 10 days but why wait until the 27th? I think that's too long. Another thing that freaks me out is he has growth problems and 90% of the cancerous tumors in this gland stem from the thyroid gland...what if he's had this his whole life?? I'm just worried about him. I want answers and I have to at least finish out the antibotics before they will see us. If it's benign he's still not out of the clear because his facial nerves run directly through the gland and it's a very risky surgery...I don't trust our current Dr. but I'm trapt with my other Laryngomalacia baby that needs the RSV shot here in Arkansas, I feel torn between the two. I dont' know how much more of this kind of stuff I can take. I can't lose him. And the stupid/mean people that have been talking to me today during this situation I just wish they could understand what it's like for me on a daily basis because maybe they wouldn't be so mean about me calling worried about my sick baby. I'm just praying he's going to be fine. There is more to this story but I'm just too tired to even write it all out...

Declan the night he almost died in the hospital.

Sleeping during his time in the hospital

Finally feeling better Day 5

Declan's Surgery Feb. 2010

One Type of Sawyer's Stridor

Sleep Study - Dec. 2010

IV in the head...never seen that before for his 5 day hospital stay in Jan. 2011

Happy Baby

Sawyer's First Surgery - Supraglottoplasty 2-16-2011

Bronchomalacia diagnosis bottom right 7-11-2011

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.

Declan's Story

Declan was born January 31, 2008 in Little Rock, AR. He was born at 38 weeks and weighed 7 lbs. 12 oz. I had placenta previa during the pregnancy and it took him a little while to cry and pink up after delivery. I knew something was different about him from the beginning. I just felt like something was wrong. At our first Dr. appointment at our (Primary Care Physician) PCP (which is a military doctor on base) I raised concerns about his breathing, only to be reassured that it was my imagination and not to worry. Month after month went on. Every month we had a check-up or an illness (typically ear infection and upper respitory). Every time we were seen the Dr. brushed off my observations of breathing problems/throwing up as nothing important. In August 2008, my husband left for Qatar on deployment and everything went downhill from there. The Dr. we had been seeing was on vacation and we were seen by Col. Havel (our savior). She LISTENED to my concerns and valued my input. She also noticed that his growth was significantly dropping month by month and was concerned. So she put in a referral to ENT and Radiology for a Swallow Study and Upper GI at Arkansas Childrens Hospital. Needless to say, we switched to Col. Havel as our primary care physician ASAP! In September 2008, Declan had an Upper GI scan, which came back normal. His swallow study is cancelled because his Upper GI came back normal. In late November 2008, we were seen for the first time by ENT...notice August to November. He was 10 months old. They looked him over and felt he was completely normal but decided to give him a laryngoscopy in office just to be sure. As they scoped him I watched the monitor and about 5 seconds in, he says, "oh yeah there it is". I'm thinking there what is? And then holy cow...they've found something. My emotions went back in forth from scared to death to relief that something was now known. You of course don't want your child to have a condition but you also want validation that you knew something was happening. Especially for me after 10 months, 2 doctors, and a radiologist telling me nothing was wrong. After shouting out "there it is", he remained silent for the remainer of the scope and then discussed things with the other doctors before speaking with me. Meanwhile, I am wondering what my child could have while trying to console his wails from being held down and prodded with a scope. Finally, it seemed like hours, the doctor comes in and tells me Declan has mild laryngomalacia. The Dr. felt that although he seemed to be having growth problems, frequent ear infections, frequent vomitting, and frequent respitory illnesses his laryngomalacia was not severe enough to do anything about it. He wanted to monitor him over the next few months. He said if he had any more ear infections he wanted to put tubes in his ears, but for now he just wanted to monitor with monthly visits. He was put on Zantac (which he hated). December 2008, bronchitis leads to pneumonia. January 2009, ear infection number 5 hits. Giving the doctor a "reason" for surgery. While under for surgery the doctor was going to remove his adenoids and tonsils and "look at his laryngomalacia" to decide if he wanted to correct it or not. The surgery was scheduled two weeks prior to my husband's return from overseas. I contacted his Boss at work and they contacted the Red Cross. The Red Cross got him home early and my husband arrived home on February 13, 2009, 3 days before our son's surgery. The the day of Declan's surgery we told the doctor we wanted the supraglotoplasty if it was even a question that he needed it done in his mind. After 15 minutes in surgery, Declan had a set of tubes, no tonsils/adenoids, and according to our ENT doctor "non-existent" laryngomalacia. (He even wrote this in his notes to our PCP). He was put on pediasure starting in February 2009. After continuing to have problems with throwing up and weight gain Declan was diagnosed with Failure to Thrive in April 2009. He was also placed on prevacid instead of zantac. We were scoped by GI (Gastro-Intestinal) Dr's in August 2009. However, around August 2009, we also started to see him moving upward on the growth chart. They told me they found that he had a "food allergy." But they didn't know what food was causing it. They believed since he had primarily been on milk his entire life that this is the cause and decided it would be best for him to be taken off his pediasure and go on a food elimination diet. Elminating one food item at a time from his diet until he does better. Obviously, this was one of those "tough call" moments in my life. I decided (with guidance from our PCP) that it was best to look at the entire picture including the fact that he had failure to thrive and was finally beginning to gain weight. We decided to forego the GI doctor's food elmination plan and stick with what we were doing. The remaining months of 2009 were miserable as most winter months are in this house. After having many more ear infections and respitory problems Declan was scheduled for a supraglotoplasty and new tubes in January 2010. When the Dr. corrected his laryngomalacia he said it was SEVERE and very pronounced. Declan was 2 years old. We were stunned that we were told his laryngomalacia was "non-existent" and then to find out it was "severe" was unbelievable. I am still angry from that discovery. At the time, I didn't know what to say because when you are finding things out after surgery the only thing you really care about is that your baby is okay and what they found. It was futile to start a fight with the doctor over his gross neglect for my son's well-being. At his follow up appointment in April, I raised questions about something going wrong in his surgery. His voice had changed and almost had become inaudible. The Dr. said it was possible some "nerves" had been damaged but it was most likely nothing and that it would go away with time. In April 2010, he was scheduled for a swallow study which he had never had before (remember it was cancelled in 2009?). He had deep penetration to aspiration on EVERY drink he took! I was stunned. For 2 years my child had been aspirating and NO ONE knew? I know I raised plenty of red flags and was shot down. Not to mention that the doctor's scoped his airway (looking back on it I can see the inflamation on his airway but I guess the Dr. just assumed he was already on thickener?) I don't know? His type of aspiration is called "silent aspiration." He would "clear his throat, cough a while later after drinking, and get a raspy voice." It was at this moment in time that I swore NEVER to allow a Dr. to strong arm me when I KNEW something was wrong. I am the only advocate for my child. That is a shame and wrong but I would NEVER let this happen again. I would have answers to the questions I raised from this moment on. Declan continued throwing up throughout the year but got much better after his surgery. He still seemed to have problems with his digestion though, so since he had come to a stand still on growth we decided to consult GI again about a food elimination diet. They wanted to scope him again before deciding on any plans for his treatment. This time I was told he had Eosinophillic Esophagitis (aka: the food allergy back in August). After researching the problem I found out that there was a medical way to fix this problem (steroid) versus a food elimination diet, which I was told by the Dr in August was the ONLY treatment and I was also not given the full information on what he originally had in August as well. Considering that I now knew there was another option and that I had been lied to, I decided to get a second opinion on his "allergy" situation. (We did try the food elmination diet but he did not take to it well, he lost 3 lbs.) We went to the allergist June 2010. The results came back completely NORMAL, even to milk! Hmmm weird?? The GI people said he was allergic to milk? WTF? The allergist explained what he does for eosinophillic esophagitis (which is an allergy but it is unknown and can be anything from something he eats to an allergy to grass), which was a steroid treatment (I knew this, however, I did not know it was just a simple inhaler that is frequently used for asthma). Instead of inhaling the steroid he was to swallow it. Within 5 days he was 100% better! It was AMAZING! I decided to keep this a secret from the lying GI doctors. He had a planned scope in August 2010 with GI and I wanted to see the un-tainted results from his scope (hoping we would see progress towards a healthier esophagus). The doctor came in and said "you won't believe this but he is cured." I said, "Really? That amazing because he was given the steroid that you and your associates refused to give him LAST YEAR which would've saved him at least a year of pain and agony." He was flabberghasted and defensive (of course) he continued to reiterate that food elmination was the ONLY way and that the steroids was only temporary. My thoughts were temporary or not, at least right now he's better and we can focus on helping him GROW which is obviously a bigger problem than anything else at the moment. The problem was this doctor lived his private life using the food elmination diet and he was bringing his own life choices into his practice as FACT because it worked for him. He was wrong not to give the full information to me though. He then kept having his associates periodically call, guilt tripping me into believing that I was a bad mother for putting him on the steroid. This continued up until December 2010, when he was hospitalized for 5 days for excessive vomiting and ketones in his urine. He almost died actually. He went down in a matter of hours from throwing up due to a stomach virus. It was insane. He was acting so weird, staring off into space at the walls and not responding to our questions (which is not usual). I took him to the first hospital nearest to us, after being there an hour and running tests they transported us via ambulance to Arkansas Children's. ACH was very busy that night and waited too long to give him the extra sugar he needed in his IV. We arrived at 7 pm (his sugars were 28), he didn't receive the very large dose of sugar until 12am, when they rushed in frantically after getting his sugar results back. At that point he was very comatose and withering up. They believed he might have had brain damage and kept him 5 days in the hospital monitoring him. (THANK GOD he did not have brain damage from their lack of attention) The good news about this was that we had alot of doctors paying attention to Declan for the first time and I was able to address my problems with the GI doctor directly as well as discuss breathing issues and other problems with the pulmonologist that was assigned to us. The pulmonologist reassured me that I was making the correct decision in keeping him on the steroid for now and that it was not HURTING him in any way! After the hospital he had minor sicknesses (typical winter problems) throughout the winter but has held on to his weight and recently has begun to grow again! He was seen by Endocrinology in February 2011 and they said he was lacking in 1 of his growth hormones but it wasn't the vital one. However, it could be problematic. They want to monitor him over the next 4 months. In April 2011, he had another swallow study confirming he still needs to be on nectar thick liquids. ENT scheduled a sleep study after listening to my concerns regarding residual laryngomalacia (which he claims is only a 10-20% chance). His Sleep Study was scheduled May 31st but we had decided the week before to take the kids to church for the first time all winter. The baby room and 3 year old room had 5th's disease and Pink Eye warnings on the door (we didn't see them or we would've just turned around and left, they were very small). I even said dropping off my youngest son (who also has this) that he has immunity problems and NO ONE mentioned they had sicknesses in that room during the week. Well guess what happened! Everybody got sick and Declan got both 5th's disease and Pink Eye. We drove all the way down to Little Rock for his sleep study and we were told that because he had Pink Eye we couldn't be seen. They rescheduled us for AUGUST 19th! There was "nothing sooner." It's just ridiculous how far they push these kids. Needless to say we won't be going to church again since we can't keep our children from catching everything known to man. After turning 3 our PCP was able to get us a Speech Therapy appointment, since his original surgery I had been bringing up my concerns about his crystal clear speech that seemed to suddenly become muffled, garbled, and raspy after his surgery. No one told me the "nerve damage" that the ENT claimed it could be was something called vocal paralysis, which then caused him to have a delay in speech, since no one tried to intervene sooner! (So frustrating) Since his endocrinology appointment he has grown an inch and gained 5 lbs. I attribute this to his thickener. I truly believe thickener is the key to success with these kids! We should be going back to endocrinology sometime this month and I will update. I will continue to update the more I find out about Declan! But if it were my guess, I believe he still has laryngomalacia and his swallowing problems are in conjunction with this, I also believe he is having obstructive sleep apneas in the night and I believe he would do good with a CPAP at night. I want other Mom's with this problem to find similarities and know there is someone out there that does know what you are going through! Just wish I had that myself! :(