Levi had a 2nd CT of his sinuses today. Even after a 21-day cycle of antibiotics, his sinuses are blocked. So, sinus surgery is in the future. As is a tonsilectomy, repeat adenoidectomy (apparently they can grow back), and new ear tubes. Dr. Rose thinks Levi will feel much better after having this done. We appreciate that everyone keeps us in their prayers.
Tuesday, July 26, 2011
Wednesday, July 20, 2011
Tomorrow is Levi's Procedure at Duke
Tomorrow is the day that my peanuts butters goes to Duke Children's Hospital for his Upper Endoscopy with Biopsy.
We will leave home around 6 am. Check in at Duke Children's Hospital by 8 am and begin the pre-op procedures. Then, his actual procedure will take place.
WARNING: READING ANY FURTHER MAY RESULT IN BEING GROSSED OUT
The doctor will be running a tube with a light/camera/pinchy-thing on it through his esophagus and stomach to the top of the small intestine. There, they will take tissue biopsies to look for ciliac disease (the inability to process wheat products). On the way out, they will stop off in the stomach to take tissue biopsies there to determine if ulcers, infection and/or gastritis (inflammation) exist, as well as any other disease processes. Finally, they will stop in the esophagus and take tissue biopsies to look for infection and disease process as well as looking for: inflammation (a sign that his gastric problem is, in fact, reflux - what he's been treated for since May 2009); increased eosinophils (a sign that the problem is actually Eosinophilic Esophagitis aka "EE", which is what 4 of our 5 doctors highly suspect with the 5th accepting it as a possibility).
Levi always has a hard time "waking up" after anesthesia. We're hoping he's grown out of that (it's been 9 months since he was last anesthetized) but just in case, will you say an extra little prayer for my baby boy that it'll be easier than the other times? Especially since he's going to have to go through it again on Tuesday of this coming week for his CT at UNC.
The plan is that we'll speak with the doctor who will tell us what he saw while doing the procedure, but that we will not have a definitive answer on the result of the biopsies for about a week.
I appreciate that any of you reading actually care. It means a lot.
Take care.
Anna
We will leave home around 6 am. Check in at Duke Children's Hospital by 8 am and begin the pre-op procedures. Then, his actual procedure will take place.
WARNING: READING ANY FURTHER MAY RESULT IN BEING GROSSED OUT
The doctor will be running a tube with a light/camera/pinchy-thing on it through his esophagus and stomach to the top of the small intestine. There, they will take tissue biopsies to look for ciliac disease (the inability to process wheat products). On the way out, they will stop off in the stomach to take tissue biopsies there to determine if ulcers, infection and/or gastritis (inflammation) exist, as well as any other disease processes. Finally, they will stop in the esophagus and take tissue biopsies to look for infection and disease process as well as looking for: inflammation (a sign that his gastric problem is, in fact, reflux - what he's been treated for since May 2009); increased eosinophils (a sign that the problem is actually Eosinophilic Esophagitis aka "EE", which is what 4 of our 5 doctors highly suspect with the 5th accepting it as a possibility).
Levi always has a hard time "waking up" after anesthesia. We're hoping he's grown out of that (it's been 9 months since he was last anesthetized) but just in case, will you say an extra little prayer for my baby boy that it'll be easier than the other times? Especially since he's going to have to go through it again on Tuesday of this coming week for his CT at UNC.
The plan is that we'll speak with the doctor who will tell us what he saw while doing the procedure, but that we will not have a definitive answer on the result of the biopsies for about a week.
I appreciate that any of you reading actually care. It means a lot.
Take care.
Anna
Wednesday, July 6, 2011
Just be thankful...
DISCLAIMER: In no way, shape or form do I intend to minimize the very harsh reality of children with terminal illnesses.
My baby boy has chronic respiratory and sinus illness. Since he was 5 weeks old, he's had a nebulizer machine at home to administer his asthma medications. Since he was 3 months old, he's taken the highest-possible-for-his-age/weight-dose of Prevacid to treat the symptoms of reflux. He's had 4-6 courses of oral steroids each year. He is almost 29 months old.
His current list of medications includes:
Pulmicort Respules 0.5mg nebulized, twice per day ($35)
Albuterol 2.5mg nebulized, every 4-6 hours as needed for coughing and wheezing ($10)
Prevacid 15mg tablet, twice per day ($60)
Zyrtec 2.5mg, once per day at bedtime ($10)
Flonase Nasal Spray, once per nostril per day at bedtime ($10)
Prednisone 15mg, twice per day ($10)
Omnicef 250mg, once per day ($35/10 days)
Multivitamin + Omegas ($20)
At 29 months old.
I blogged a week or so ago about his specialists appointments at Duke. He also sees an ENT at Chapel Hill. He had his first set of ear tubes at just shy of 7 months old. His second set at 18 months, and his adenoids removed also at that time.
Two weeks ago today, Levi was admitted to the hospital for an asthma flare. While there, and while opportunity presented itself, our Pediatrician ordered a sinus CT to see if there was indication that blockages could be to blame for the always running nose. All of his sinus cavities were blocked. She asked us to follow-up with the ENT he sees at UNC about this. Yesterday was that day.
Now, let me just preface by saying, I feel so very blessed that Levi is not sick with a terminal illness. And my complaints about my child's illnesses are in no way meant to detract from the realities of those with children with terminal illness. I know that, even at his worst, we still have it pretty good.
But, combine the sleepless nights, side effects of all the different medications, loss from missing work due to doctor's appointments and illnesses, loss of money spent for child care he can't attend due to doctor's appointments and illnesses, and loss of money spent on medications that treat ONLY his SYMPTOMS and not the root cause of the chronic illnesses, and you have a pretty exhausted mom. With very little patience for doctors making 6 figures who walk into an exam room, listen to my chief complaint about my child, look me in the eye and say, "Be thankful it's not terminal."
You think I'm NOT thankful? I'm absolutely thankful. But I'm sick of helping pay your six-figure salary with the measley pay I get after I pay bundles for health insurance and child care, so you can blow me off by saying, "he just gets more colds that are more severe that the average child." NO, REALLY?!? That's why we're here. So you can tell us WHY. AND FIX IT. That's your JOB. That's why you make so much more money than I do.
Let me end by saying that if you're reading this blog post and you ARE the parent of a terminal child, my heart goes out to you. I cry for children like yours. And I pray earnestly for them and their families.
But, my heart also goes out to other parents of chronic children, while your children's illnesses may not be terminal, I know, first-hand, how frustrating they can be.
I'll go shut up now, and just be thankful.
My baby boy has chronic respiratory and sinus illness. Since he was 5 weeks old, he's had a nebulizer machine at home to administer his asthma medications. Since he was 3 months old, he's taken the highest-possible-for-his-age/weight-dose of Prevacid to treat the symptoms of reflux. He's had 4-6 courses of oral steroids each year. He is almost 29 months old.
His current list of medications includes:
Pulmicort Respules 0.5mg nebulized, twice per day ($35)
Albuterol 2.5mg nebulized, every 4-6 hours as needed for coughing and wheezing ($10)
Prevacid 15mg tablet, twice per day ($60)
Zyrtec 2.5mg, once per day at bedtime ($10)
Flonase Nasal Spray, once per nostril per day at bedtime ($10)
Prednisone 15mg, twice per day ($10)
Omnicef 250mg, once per day ($35/10 days)
Multivitamin + Omegas ($20)
At 29 months old.
I blogged a week or so ago about his specialists appointments at Duke. He also sees an ENT at Chapel Hill. He had his first set of ear tubes at just shy of 7 months old. His second set at 18 months, and his adenoids removed also at that time.
Two weeks ago today, Levi was admitted to the hospital for an asthma flare. While there, and while opportunity presented itself, our Pediatrician ordered a sinus CT to see if there was indication that blockages could be to blame for the always running nose. All of his sinus cavities were blocked. She asked us to follow-up with the ENT he sees at UNC about this. Yesterday was that day.
Now, let me just preface by saying, I feel so very blessed that Levi is not sick with a terminal illness. And my complaints about my child's illnesses are in no way meant to detract from the realities of those with children with terminal illness. I know that, even at his worst, we still have it pretty good.
But, combine the sleepless nights, side effects of all the different medications, loss from missing work due to doctor's appointments and illnesses, loss of money spent for child care he can't attend due to doctor's appointments and illnesses, and loss of money spent on medications that treat ONLY his SYMPTOMS and not the root cause of the chronic illnesses, and you have a pretty exhausted mom. With very little patience for doctors making 6 figures who walk into an exam room, listen to my chief complaint about my child, look me in the eye and say, "Be thankful it's not terminal."
You think I'm NOT thankful? I'm absolutely thankful. But I'm sick of helping pay your six-figure salary with the measley pay I get after I pay bundles for health insurance and child care, so you can blow me off by saying, "he just gets more colds that are more severe that the average child." NO, REALLY?!? That's why we're here. So you can tell us WHY. AND FIX IT. That's your JOB. That's why you make so much more money than I do.
Let me end by saying that if you're reading this blog post and you ARE the parent of a terminal child, my heart goes out to you. I cry for children like yours. And I pray earnestly for them and their families.
But, my heart also goes out to other parents of chronic children, while your children's illnesses may not be terminal, I know, first-hand, how frustrating they can be.
I'll go shut up now, and just be thankful.
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