October 12th 2011
Our dear sweet Mason Michael was born. He was a healthy 8lbs 13oz and 21.5inch. He passed all of his newborn “tests” with flying colors and was nursing and sleeping like a champ. Everything about him was absolutely perfect.
Our dear sweet Mason Michael was born. He was a healthy 8lbs 13oz and 21.5inch. He passed all of his newborn “tests” with flying colors and was nursing and sleeping like a champ. Everything about him was absolutely perfect.
November 25th 2011
We noticed Mason was having difficulty breathing. Of course it was the weekend so our only option was the lovely ER. He was indeed having trouble breathing and was admitted to the Children’s Hospital within a few hours. The doctors ordered a test for RSV and started breathing treatments to help open up his airways. We also had to use an “industrial snot sucker” as my husband and I like to call it. This is no bulb syringe, people; this is a plug into the wall, electric powered machine with a hose that sucks that thick mucus right out of your nose. Mason doesn’t get a runny nose; I don’t think his mucus can run it is SO thick, so we must use the machine. After a couple days in the hospital and a negative RSV test we were sent home with continued breathing treatments and orders to rent a snot machine ( We ended up buying the machine, thank goodness, because we still use it today!) His discharge papers said Bronchiolitis & Respiratory Distress
We noticed Mason was having difficulty breathing. Of course it was the weekend so our only option was the lovely ER. He was indeed having trouble breathing and was admitted to the Children’s Hospital within a few hours. The doctors ordered a test for RSV and started breathing treatments to help open up his airways. We also had to use an “industrial snot sucker” as my husband and I like to call it. This is no bulb syringe, people; this is a plug into the wall, electric powered machine with a hose that sucks that thick mucus right out of your nose. Mason doesn’t get a runny nose; I don’t think his mucus can run it is SO thick, so we must use the machine. After a couple days in the hospital and a negative RSV test we were sent home with continued breathing treatments and orders to rent a snot machine ( We ended up buying the machine, thank goodness, because we still use it today!) His discharge papers said Bronchiolitis & Respiratory Distress
February – May 2012
Mason had multiple colds that were more troublesome than most due to his thick mucus. He also had a couple ear infections in this time frame.
Mason had multiple colds that were more troublesome than most due to his thick mucus. He also had a couple ear infections in this time frame.
When Mason was 6 months old we decided it was time to start
introducing a bottle. He was having NOTHING to do with it, I’m talking purse
your lips shut refusal. I started offering less nursing and more bottle
feedings hoping to give him no choice.
June 2012
Mason seemed to have difficulty breathing again. A trip to our pediatrician and an X-ray gave him his first diagnosis of pneumonia. We were to start breathing treatments again and some oral medications.
Mason seemed to have difficulty breathing again. A trip to our pediatrician and an X-ray gave him his first diagnosis of pneumonia. We were to start breathing treatments again and some oral medications.
August 10th – 13th 2012
We were in the pediatrician’s office daily because Mason’s breathing was just too labored for me to be comfortable with. He would have a breath per minute rate as high as 90. At this time we were doing Albuterol breathing treatments every 4hrs and Budesonide breathing treatments morning and night. He was also on oral medication for the treatment of pneumonia. During this time we also started a reflux medicine because there was concern of aspirational pneumonia.
We were in the pediatrician’s office daily because Mason’s breathing was just too labored for me to be comfortable with. He would have a breath per minute rate as high as 90. At this time we were doing Albuterol breathing treatments every 4hrs and Budesonide breathing treatments morning and night. He was also on oral medication for the treatment of pneumonia. During this time we also started a reflux medicine because there was concern of aspirational pneumonia.
August 17th 2012
At this time we had two major concerns: 1) Mason’s breathing was very labored and sounded horrible when his pediatrician listened to him and 2) he was still refusing the bottle and now even somewhat completely refusing nursing. Pneumonia and eating issues lead to dehydration concerns, which led us to the Children’s Day Hospital. At this time Mason’s Pediatrician called in a Pediatric Pulmonologist to come visit us in the hospital and evaluate Mason. We also met with a speech pathologist and she could not get mason to take fluids of any kind despite trying many different bottles and cups. The pediatric pulmonologist decided Mason needed to be admitted to the Children’s Hospital for a few days because he believed Mason could have aspirational pneumonia and the dehydration was concerning. While in the hospital Mason was put on a solids only diet and received all his fluids and medications through an IV. A Dysphagiagram (swallow study) was also performed during this stay. Within four days Mason cleared up pretty well and we got him taking fluids from a sippy cup by thickening them. The swallow study did not show him aspirating fluids but there was mild “trapping” or “delayed clearing” that could lead to aspiration.
At this time we had two major concerns: 1) Mason’s breathing was very labored and sounded horrible when his pediatrician listened to him and 2) he was still refusing the bottle and now even somewhat completely refusing nursing. Pneumonia and eating issues lead to dehydration concerns, which led us to the Children’s Day Hospital. At this time Mason’s Pediatrician called in a Pediatric Pulmonologist to come visit us in the hospital and evaluate Mason. We also met with a speech pathologist and she could not get mason to take fluids of any kind despite trying many different bottles and cups. The pediatric pulmonologist decided Mason needed to be admitted to the Children’s Hospital for a few days because he believed Mason could have aspirational pneumonia and the dehydration was concerning. While in the hospital Mason was put on a solids only diet and received all his fluids and medications through an IV. A Dysphagiagram (swallow study) was also performed during this stay. Within four days Mason cleared up pretty well and we got him taking fluids from a sippy cup by thickening them. The swallow study did not show him aspirating fluids but there was mild “trapping” or “delayed clearing” that could lead to aspiration.
September 2012
Mason had a bronchoscopy done by his pulmonologist. The goal was to check out parts of the lungs and throat and look for fluid in the lungs. They found lipids associated with aspiration pneumonia and diagnosed a slightly enlarged epiglottis. All findings were consistent with a diagnosis of aspirational pneumonia so we were to continue thickening fluids. Having a diagnosis was a great feeling and knowing that thickening fluids would solve our problem was an even better feeling.
Mason had a bronchoscopy done by his pulmonologist. The goal was to check out parts of the lungs and throat and look for fluid in the lungs. They found lipids associated with aspiration pneumonia and diagnosed a slightly enlarged epiglottis. All findings were consistent with a diagnosis of aspirational pneumonia so we were to continue thickening fluids. Having a diagnosis was a great feeling and knowing that thickening fluids would solve our problem was an even better feeling.
October 12th 2012
Mason had his 1st Birthday! Mason was doing pretty darn good health wise and he was just the happiest little dude around. Loving life!
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Mason had his 1st Birthday! Mason was doing pretty darn good health wise and he was just the happiest little dude around. Loving life!
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November 12th 2012
I was beginning to feel crazy at this point. We had a diagnosis, we were doing everything we were supposed to do but I just didn’t feel right. Mason was having labored breathing and just seemed off to me. I took him in to see the pulmonologist and he thought he sounded all right but ordered an x-ray just in case. The film came back looking clear.
November 16th 2012
I know I just took him to see the pulmonologist and the x-ray was clear but he just didn’t seem right to me. They say to trust your motherly instinct (or at least that’s what my husband says) so I made an appointment with his pediatrician. She took one look at him and I could tell she was concerned. After a long listen to his chest she told me he sounded “terrible.” She ordered an x-ray and this time it definitively showed pneumonia. Four days….HUGE change. Some people can smell when it’s going to rain, I swear I have this uncanny sense of when Mason is getting sick. We sent the new film over to the pulmonologist and he confirmed the diagnosis, started medication and upped the daily breathing treatments he was already on. This time he didn’t clear up quickly. In fact he didn’t seem to be clearing up at all.
I know I just took him to see the pulmonologist and the x-ray was clear but he just didn’t seem right to me. They say to trust your motherly instinct (or at least that’s what my husband says) so I made an appointment with his pediatrician. She took one look at him and I could tell she was concerned. After a long listen to his chest she told me he sounded “terrible.” She ordered an x-ray and this time it definitively showed pneumonia. Four days….HUGE change. Some people can smell when it’s going to rain, I swear I have this uncanny sense of when Mason is getting sick. We sent the new film over to the pulmonologist and he confirmed the diagnosis, started medication and upped the daily breathing treatments he was already on. This time he didn’t clear up quickly. In fact he didn’t seem to be clearing up at all.
November 28th 2012
Mason should be better by now, he wasn’t. We went in for our follow-up with the pediatrician. She looked, listened and took an x-ray. He was indeed not any better. She was very concerned about his lungs at this visit. She didn’t hear a real localized area of crackles like typically associated with pneumonia. To her all of his lungs sounded bad, at this point she suggest I go straight to the pulmonologist for his opinion but she went ahead and ordered a sweat test for Cystic Fibrosis. This was one of the hardest appointments for me to date. I knew something wasn’t right so I was glad she was persistent and I was glad I wasn’t crazy. However, CF is something that hits very close to home and the thought of my child possibly having it was a lot to handle. This was the first time, for me anyway, that I really began to realize something may be seriously wrong with my baby. It was beyond the “dang it preschool keeps sending home germs” thought and more of the heart drops to your stomach worry feeling.
Mason should be better by now, he wasn’t. We went in for our follow-up with the pediatrician. She looked, listened and took an x-ray. He was indeed not any better. She was very concerned about his lungs at this visit. She didn’t hear a real localized area of crackles like typically associated with pneumonia. To her all of his lungs sounded bad, at this point she suggest I go straight to the pulmonologist for his opinion but she went ahead and ordered a sweat test for Cystic Fibrosis. This was one of the hardest appointments for me to date. I knew something wasn’t right so I was glad she was persistent and I was glad I wasn’t crazy. However, CF is something that hits very close to home and the thought of my child possibly having it was a lot to handle. This was the first time, for me anyway, that I really began to realize something may be seriously wrong with my baby. It was beyond the “dang it preschool keeps sending home germs” thought and more of the heart drops to your stomach worry feeling.
December 5th 2012
Jonathan being the ever-amazing husband that he is took Mason in for his sweat test. He put Mason in a heavy jacket and ran up and down the halls getting that boy to sweat. The next few days were horrible. You hoped for the best and prepared for the worst. It was NEGATIVE!
Jonathan being the ever-amazing husband that he is took Mason in for his sweat test. He put Mason in a heavy jacket and ran up and down the halls getting that boy to sweat. The next few days were horrible. You hoped for the best and prepared for the worst. It was NEGATIVE!
December 10th 2012
We met with the pulmonologist to discuss everything. It is at this point that we first discussed the possibility of Mason having Children’s Interstitial Lung Disease (chILD).
We met with the pulmonologist to discuss everything. It is at this point that we first discussed the possibility of Mason having Children’s Interstitial Lung Disease (chILD).
December 12th 2012
Mason had a CT scan of his lungs to get a more detailed image of what was showing up on previous x-rays. The pulmonologist said the scan showed definitive signs of Interstitial Lung Disease. (chILD – is a group of rare lung diseases found in infants, children and adolescents. There are different types of chILD that vary in severity and in their long-term outcome.) I had been pushing for months to test, test, test and find out what was wrong with my baby because I just knew it was something more than pneumonia. Now that a doctor was giving us a diagnosis I was feeling like taking back all the wants for answers. This diagnosis was not one that settled our minds like we had hoped one would. We now know Mason has chILD but we have no idea what type. It’s almost overwhelming how one answer can lead to what seems like a million more questions. The only true way of diagnosing the type of chILD Mason has is to do a biopsy of his lung. Before we go down that road we are opting for every other possible test to find answers of what may have onset his ILD or what, if any, underlying problems he may have.
Mason had a CT scan of his lungs to get a more detailed image of what was showing up on previous x-rays. The pulmonologist said the scan showed definitive signs of Interstitial Lung Disease. (chILD – is a group of rare lung diseases found in infants, children and adolescents. There are different types of chILD that vary in severity and in their long-term outcome.) I had been pushing for months to test, test, test and find out what was wrong with my baby because I just knew it was something more than pneumonia. Now that a doctor was giving us a diagnosis I was feeling like taking back all the wants for answers. This diagnosis was not one that settled our minds like we had hoped one would. We now know Mason has chILD but we have no idea what type. It’s almost overwhelming how one answer can lead to what seems like a million more questions. The only true way of diagnosing the type of chILD Mason has is to do a biopsy of his lung. Before we go down that road we are opting for every other possible test to find answers of what may have onset his ILD or what, if any, underlying problems he may have.
December 13th 2012
First on our path is a meeting with an immunologist. We discussed what blood work he thought was necessary and most likely to bring us answers. We ran a pretty thorough panel looking at possible deficiencies. We also sent some blood off to have genetic testing done; genetic test will take about 8 weeks to get back.
First on our path is a meeting with an immunologist. We discussed what blood work he thought was necessary and most likely to bring us answers. We ran a pretty thorough panel looking at possible deficiencies. We also sent some blood off to have genetic testing done; genetic test will take about 8 weeks to get back.
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Results from the blood work showed that Mason
had a low white blood cell count. We are now getting finger pricks twice a week to try and find
out what Mason’s “baseline” is. This raises concerns that he is immune deficient.
While these results line up with ILD they don’t confirm a specific diagnosis.
December 20th 2012
Mason had an echocardiogram to look at his heart. Sometimes interstitial lung disease can be brought on by heart issues. Mason’s heart is absolutely healthy as can be. (Yay for definitive good news!)
Mason had an echocardiogram to look at his heart. Sometimes interstitial lung disease can be brought on by heart issues. Mason’s heart is absolutely healthy as can be. (Yay for definitive good news!)
December 26th 2012
Mason had his 2nd swallow study. The first time we did not see him aspirate; we just assumed from symptoms that he was and we missed it during the study. Some forms of chILD can be triggered by aspiration. We still did not see him aspirate this time but again noticed “trapping” which can lead to micro-aspiration. Another non-definitive diagnosis.
Mason had his 2nd swallow study. The first time we did not see him aspirate; we just assumed from symptoms that he was and we missed it during the study. Some forms of chILD can be triggered by aspiration. We still did not see him aspirate this time but again noticed “trapping” which can lead to micro-aspiration. Another non-definitive diagnosis.
Jan 7th 2013
We did a study at home that monitored Mason’s blood oxygen levels while he slept at night. Children with interstitial lung disease typically have low blood oxygen saturation levels and some require oxygen 24/7 and some only at night. Mason’s levels have always been great so the doctor wanted to make sure they were remaining acceptable through the night.
We did a study at home that monitored Mason’s blood oxygen levels while he slept at night. Children with interstitial lung disease typically have low blood oxygen saturation levels and some require oxygen 24/7 and some only at night. Mason’s levels have always been great so the doctor wanted to make sure they were remaining acceptable through the night.
Jan 8th 2013
We met with the pulmonologist to discuss all the tests we have had done in the last couple of weeks. Mason was also having labored and fast breathing again. The Doctor prescribed a higher dose of oral steroids for Mason to take on top of the twice a day steroid breathing treatments he does (he has been on these breathing treatments pretty much non stop since he was 6 months old). At this time the doctor expressed concern that there might be an underlying issue going on in addition to the chILD; possibly some type of chronic infection.
We met with the pulmonologist to discuss all the tests we have had done in the last couple of weeks. Mason was also having labored and fast breathing again. The Doctor prescribed a higher dose of oral steroids for Mason to take on top of the twice a day steroid breathing treatments he does (he has been on these breathing treatments pretty much non stop since he was 6 months old). At this time the doctor expressed concern that there might be an underlying issue going on in addition to the chILD; possibly some type of chronic infection.
Jan 10th 2013
We met with a Pediatric Infectious Disease Specialist (what a mouth full). Mason has had bouts of being healthy between his long stints of being very sick. Because of this it would be pretty unusual for him to have a chronic infection but there are some that fit his profile so we decided test were necessary. We added in some more blood tests but the most important test was going to be another bronchoscopy. The infectious disease specialist, immunologist and our pulmonologist have decided that getting a fluid sample from the lungs is the last test short of a biopsy that could provide us with any diagnostic insight.
We met with a Pediatric Infectious Disease Specialist (what a mouth full). Mason has had bouts of being healthy between his long stints of being very sick. Because of this it would be pretty unusual for him to have a chronic infection but there are some that fit his profile so we decided test were necessary. We added in some more blood tests but the most important test was going to be another bronchoscopy. The infectious disease specialist, immunologist and our pulmonologist have decided that getting a fluid sample from the lungs is the last test short of a biopsy that could provide us with any diagnostic insight.
Jan 17th 2013
Mason will have his 2nd bronchoscopy. They will take a look around and collect some fluids to be tested.
Mason will have his 2nd bronchoscopy. They will take a look around and collect some fluids to be tested.
Wow…after typing that all out I realize how busy we have
been and how much information there is to share. His story is complex and ever
changing but I hope I have shared it well.
After the bronchoscopy this Thursday it will be a little bit of a
waiting game while test results trickle in over the next few weeks. In the meantime
we will continue to keep Mason as healthy and happy as possible with daily
breathing treatments and oral medication. I will continue to update the blog
with information as it comes and periodically with how little dude is doing. I
hope this wasn’t “information overload” for everyone!
We appreciate you taking the time to get up-to-speed on
Mason’s journey. We want to thank all of our family and friends from the bottom of
our hearts for all the thoughts and prayers that have been sent our way. We
hope they continue as we travel down the road towards a healthy future for
Mason.
You all have really been through a lot and I'm shocked at what you've endured as a family since we last spoke. I will be keeping you all in my thoughts and prayers and look forward to hearing more updates about your lil' man.
ReplyDeleteWow. Mason is a lucky little boy to have such loving and caring parents. Keeping you all in my prayers. His future is BRIGHT!
ReplyDelete<3
I know how exhausting and frustrating having a child with a lung and heart condition that hasn't been diagnosed is. Be sure and try to take care of yourselves and each other while taking care of him. Take all the help that is offered from family and friends. You will need it and they love and care about all of you. Trust your instincts because no one knows him better than you. Houston has a huge medical community and if you find that you need services here we have more than enough room and would love to help in anyway we can. Sounds to me like you are doing exactly what needs to be done,the waiting is so hard. Will continue my prayers for all of you.
ReplyDeleteLots and lots and lots of prayers your way! Is your ID dr Dr Chang? If it is ... he is pretty much the smartest person I have ever met and/or worked with. Seriously. He is amazing. I'm not sure what I can do but pray ... but if you ever have any medical questions, I can do my best to find good answers. Love you guys!
ReplyDeleteDr. Chang is our ID doctor and he seemed very knowledgeable and was extremely nice. Glad to know he comes with such great praise from you! Thanks for the prayers and for offering help and guidance. We may have to take you up on that....all this medical stuff can get a little overwhelming!
DeleteWhat a journey! After reading through all your posts I am reminded to count my blessings. My son, Judah, was diagnosed NEHI August 22, after only having just a couple of signs that pointed to it (retractions, crackles, and quick breathing...all of which I had no idea what I was seeing or hearing). After 2 chest x-rays, 2 echocardiograms, and a high resolution CT in the span of less than 2 weeks (11 days to be exact) he was diagnosed NEHI. For me, it was hard to accept because it was like one day he was fine and the next day he had lung disease. Just like that. Please keep writing. I need the encouragement in your words and knowing another NEHI journey. Thank you!
ReplyDeleteKrystal Lamar