We had a much too eventful night last night. Gavin went to bed with nothing more than a slight cough now and then and woke at midnight struggling to breathe, pale as a ghost, and shivering uncontrollably. Called 911. Firetruck with lights and all in cul-de-sac. Pulse ox was 100% but still struggling to breathe. Hit him with the mother load of steroids and got it under control. He spent the rest of the night with the munchies while Matt and I alternately snuck a few hrs sleep. Kaylin slept peacefully the entire time and had no idea anything had happened. G's lungs are clear today and the best the ped could come up with was maybe he choked on some mucus while sleeping and had a bronchial spasm. Really?? EOS peeps...any thoughts?
Deep breath. Need sleep.
Monday, December 6, 2010
Saturday, November 6, 2010
Warning: This is long. Very very long.
Tonight is not going as planned. I guess that's the theme around here lately. It's midnight, which is not so terribly late, except that I have to get up at 5:45am to set up a craft booth at the Holiday Market, at which I will need to be cheerily greeting attendees for over 5 hours. But now I'm up and I can't turn my brain off, so I figured this was a perfect time to update the blog.
Hmmm, where to begin? I guess I'll need to pick which kid to start with. Since the blog title does have his name in it, let's start with Gavin...
As a recap, Gavin was diagnosed with EE in late July, we started treatment in August, tested negative to all skin prick testing in September, and have had a pleasantly uneventful first few months of school. With no known food allergies to go on, we decided to follow the doctor's recommended treatment of swallowed steroids. I want to know more before making a decision to take food away, and if I've learned anything from my new EOS family on Facebook, it's that if you make too many changes at once, you don't know which changes are causing the results - good or bad.
Soooo, I kept thinking about updating the blog, but I felt guilty. Gavin has been doing so well, and so many of the EOS kids are struggling with so much, I just couldn't bring myself to blog about our trivial events. I'm starting to realize though, that even though my son is still able to eat all foods, and he's never tasted elemental formula, or eaten through a tube, or been doubled over in pain, or any of the other things these kids battle each day, it's out there looming in our future and waiting for us. I now speak an entirely new language than I did 3 months ago. It's the EOS language, and if you're part of the 'family' you know exactly what I mean. I read every FB thread to learn more and gather information about doctors and centers and procedures so I can make informed decisions when the time comes. My life has changed drastically, even though my family looks exactly the same as we did before, and I'm slowly learning how to accept that.
Ok, back on track Elise, this part was supposed to be about Gavin. So the sick hit our house about 2 weeks ago. It started with croup. 3 days of steroids took care of the barking and turned my angel into a monster who, at his worst, took off his shoes and threw them at my head while I was driving - for not stopping to get him a milkshake at Chick-fil-a. At least he didn't start biting this time. Anyway, the croup morphed into a common cold, which of course is never 'common' for Gavin since it sets off his asthma. At least he has a 'neb friend' at school and they do their breathing treatments together. The cold symptoms have stuck around way too long and the cough has moved in, which brings us to tonight. The kids and I all went to bed early so we could be nice and rested for tomorrow, but then Gavin's coughing started and just didn't stop. The albuterol inhaler (which we refer to as 'puffs'), along with saline, nose blowing, water, and extra pillows to elevate his head didn't make a dent, so I sent the boys outside into the cold to see if that would help. They are now downstairs watching Harry Potter while Gavin eats a Dum Dum. Bed time take two in just a bit.
On to the other kid...
To recap, Kaylin has been a snorer since birth. She made so much noise as an infant that I had to move her into her room at 3 weeks just because I couldn't even sleep when she was sleeping. At age 3 we did a sleep study to confirm she had sleep apnea, due to her extremely large tonsils, and she ended up with surgery to have her tonsils and adenoids removed and ear tubes put in. This fixed the sleep apnea and ear infections, but she has struggled ever since with chronic congestion, fluid in her ears, and snoring. The ENT suggested a CT scan a while ago, but the prerequisite was a month of antibiotics and I just couldn't bring myself to give a healthy child that much antibiotics, so we went with Plan B, which was allergy testing. After skin prick and intradermal testing with not one single positive, the allergist suggested the CT scan. Her recent hearing test showed some hearing loss in both ears due to retracted ear drums, so we need some answers. I sucked it up and gave her a month of Omnicef and prepped her for the scan.
Hmmm, where to begin? I guess I'll need to pick which kid to start with. Since the blog title does have his name in it, let's start with Gavin...
As a recap, Gavin was diagnosed with EE in late July, we started treatment in August, tested negative to all skin prick testing in September, and have had a pleasantly uneventful first few months of school. With no known food allergies to go on, we decided to follow the doctor's recommended treatment of swallowed steroids. I want to know more before making a decision to take food away, and if I've learned anything from my new EOS family on Facebook, it's that if you make too many changes at once, you don't know which changes are causing the results - good or bad.
Soooo, I kept thinking about updating the blog, but I felt guilty. Gavin has been doing so well, and so many of the EOS kids are struggling with so much, I just couldn't bring myself to blog about our trivial events. I'm starting to realize though, that even though my son is still able to eat all foods, and he's never tasted elemental formula, or eaten through a tube, or been doubled over in pain, or any of the other things these kids battle each day, it's out there looming in our future and waiting for us. I now speak an entirely new language than I did 3 months ago. It's the EOS language, and if you're part of the 'family' you know exactly what I mean. I read every FB thread to learn more and gather information about doctors and centers and procedures so I can make informed decisions when the time comes. My life has changed drastically, even though my family looks exactly the same as we did before, and I'm slowly learning how to accept that.
Ok, back on track Elise, this part was supposed to be about Gavin. So the sick hit our house about 2 weeks ago. It started with croup. 3 days of steroids took care of the barking and turned my angel into a monster who, at his worst, took off his shoes and threw them at my head while I was driving - for not stopping to get him a milkshake at Chick-fil-a. At least he didn't start biting this time. Anyway, the croup morphed into a common cold, which of course is never 'common' for Gavin since it sets off his asthma. At least he has a 'neb friend' at school and they do their breathing treatments together. The cold symptoms have stuck around way too long and the cough has moved in, which brings us to tonight. The kids and I all went to bed early so we could be nice and rested for tomorrow, but then Gavin's coughing started and just didn't stop. The albuterol inhaler (which we refer to as 'puffs'), along with saline, nose blowing, water, and extra pillows to elevate his head didn't make a dent, so I sent the boys outside into the cold to see if that would help. They are now downstairs watching Harry Potter while Gavin eats a Dum Dum. Bed time take two in just a bit.
On to the other kid...
To recap, Kaylin has been a snorer since birth. She made so much noise as an infant that I had to move her into her room at 3 weeks just because I couldn't even sleep when she was sleeping. At age 3 we did a sleep study to confirm she had sleep apnea, due to her extremely large tonsils, and she ended up with surgery to have her tonsils and adenoids removed and ear tubes put in. This fixed the sleep apnea and ear infections, but she has struggled ever since with chronic congestion, fluid in her ears, and snoring. The ENT suggested a CT scan a while ago, but the prerequisite was a month of antibiotics and I just couldn't bring myself to give a healthy child that much antibiotics, so we went with Plan B, which was allergy testing. After skin prick and intradermal testing with not one single positive, the allergist suggested the CT scan. Her recent hearing test showed some hearing loss in both ears due to retracted ear drums, so we need some answers. I sucked it up and gave her a month of Omnicef and prepped her for the scan.
The day after Gavin came down with croup, Kaylin had her CT scan. Matt took her down to Scottish Rite and reported back that it was very easy. She got her nervous face at one point (see photo), but Matt said he was able to talk to her the whole time and tell her stories to distract her, and it was over before they knew it.
We follow up with the ENT on Nov. 16 to find out if she recommends sinus surgery. To add to her story, Kaylin woke up about 2:00 am on Tues night/Wed morning saying her neck hurt. She has been stuck in the same position (with her head tilted down and a little to one side) since then, and can't move her neck. It is called temporary tortacoulis and can be caused by sleeping wrong or when a child's lymph nodes are inflammed after a cold. It is supposed to go away with some rest after a day or two, but now we're at 3 days and of course the week is over and the doctors' offices are closed. I'm crossing my fingers that a good night's sleep and a day of rest tomorrow will fix her up.
In the midst of all this, I got laryngitis and recovered, Matt got laryngitis and is working on the recovery part, and of course I'm behind on bills, housework, work, Girl Scout registrations, and pretty much anything else there is.
HEY!!!! It JUST came to me! I know why Kaylin's neck spazzed out! Tuesday night she went with my mom to the Sound of Music Sing-a-long at the movie theatre. Kaylin was so excited she wanted to sit in the very first row, so she sat there, looking up at the screen while singing, for over 3 hours. That HAD to be it!
And now...I can go to sleep. For 4 hours. Goodnight.
Thursday, September 30, 2010
Thank you for giving our kids HOPE!
I just want to say thank you to everyone who has supported APFED by buying a Macy's Shop for a Cause ticket. I know some of you bought tickets to give away, some of you don't even know if you can shop at a Macy's that day, and some of you have even asked around at work. I also know that there are many of you who have probably ordered online and I don't even know who, but my heart swells with love and thanks tonight. Take a minute to watch this APFED video and see the kinds of kids you are giving hope to.
I also want to say a special thank you to Karen Coffeen, the Preschool Director at our old preschool Due West United Methodist Church. After hearing about this disorder and this fundraiser, she took it upon herself to send out an email to every parent and teacher in the school asking them to buy tickets. She didn't even realize that a current student and his brother (a preschool graduate) also suffer from the same Eosinophilic disorder. I can't wait to hear what the response is from the parents, but even if no tickets are sold, her willingness to fight for our kids gives me hope and strength.
I'm thankful that we have had an uneventful week at the Ackerman house. Kaylin and Gavin are both feeling well and are on track with their medications, and I'm learning more about this disease every day.
I also want to say a special thank you to Karen Coffeen, the Preschool Director at our old preschool Due West United Methodist Church. After hearing about this disorder and this fundraiser, she took it upon herself to send out an email to every parent and teacher in the school asking them to buy tickets. She didn't even realize that a current student and his brother (a preschool graduate) also suffer from the same Eosinophilic disorder. I can't wait to hear what the response is from the parents, but even if no tickets are sold, her willingness to fight for our kids gives me hope and strength.
I'm thankful that we have had an uneventful week at the Ackerman house. Kaylin and Gavin are both feeling well and are on track with their medications, and I'm learning more about this disease every day.
Sunday, September 19, 2010
Macy's Shop for a Cause to benefit APFED
Many of you have asked what you can do for Gavin. This is a GREAT way to support research for his disorder! All you do is buy a $5 ticket and then you can use your ticket to save up to 25% off at any Macy's store on October 16th.
Macy's will donate 100% of every $5 ticket (purchased through me or the Apfed website) to the American Partnership For Eosinophilic Disorders. Even if you don't use the coupons, you will be donating to a great cause. Please help us find a cure for Gavin and other children suffering from Eosinophilic disorders.
I have tickets with me at all times, Matt has some at work, and I would be happy to meet up somewhere if you are interested. You can also order them online using the link above. Just make sure to choose 'Macy's Shop for a Cause' for Type of Payment.
*Do not order directly from the Macy's website! They choose 1 non-profit each year for all of their web sales to go towards, and it is not Apfed. Let me know if you would like more information or have any questions.
Thank you all from the bottom of my heart, and of course, thanks from Gavin!
Macy's will donate 100% of every $5 ticket (purchased through me or the Apfed website) to the American Partnership For Eosinophilic Disorders. Even if you don't use the coupons, you will be donating to a great cause. Please help us find a cure for Gavin and other children suffering from Eosinophilic disorders.
I have tickets with me at all times, Matt has some at work, and I would be happy to meet up somewhere if you are interested. You can also order them online using the link above. Just make sure to choose 'Macy's Shop for a Cause' for Type of Payment.
*Do not order directly from the Macy's website! They choose 1 non-profit each year for all of their web sales to go towards, and it is not Apfed. Let me know if you would like more information or have any questions.
Thank you all from the bottom of my heart, and of course, thanks from Gavin!
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