Sophie's pediatric flexible bronchoscopy is tomorrow morning. (original post here) It's a safe, fairly quick, and not too uncommon procedure. However, I've decided to try out a geeky gadget called Twitter to send updates. I've added my twitter to my sidebar so you can read the updates there or sign up with twitter yourself. I should be able to send updates through my cell phone that will show up on my blog sidebar that can keep you up to date. Hopefully it will be quick and easy procedure and I won't have much time to say much, but I thought I'd give it a try. Hey, it's better than twittering a typical day or you'd read things like: changed dirty diaper, cleaned puke, changed another dirty diaper, lunch.
Honestly, I think I'm the one with the most nerves about this. The idea of sedating my little girl has me, well, uncomfortable. Thanks to Mark's mom for coming up to play with Alexander and Cathy who will be keeping me company until Mark's morning classes are done!
Wednesday, January 21, 2009
Tuesday, January 20, 2009
Yes We Did
Too emotional for words, with great pride, hope, and jubilation I join the world in celebrating this historic day.
CONGRATULATIONS MR. PRESIDENT!
Monday, January 19, 2009
MLK Day of Service, 44 in 24
Happy MLK Day of Service! Though my day of service means that I am determined to finish cleaning my own kitchen, I do value this national service event. After serving in AmeriCorps*VISTA for over 2 years and working in the domestic violence field for over 5 years, I value community service and hope to instill it in my kids. I long for the free time to get back out there. Thanks to those getting out there today.
In any case at my house we've got inauguration fever! Sophie had a dirty diaper that Mark was in charge of this morning. I overheard him say, "Don't worry Baby. Change is gonna come!" Crack me up...
And the countdown officially begins...
Sunday, January 18, 2009
Saturday, January 17, 2009
Birthday Boy
What a big boy you are. Over the last year you've had so many accomplishments and experiences. Your vocabulary has exploded and your imagination has taken off. I love our make believe adventures, your beautiful paintings, and reading stories with you. Potty training (finally) happened. Your beautiful eyes turned from blue to green, like mine. You started preschool and I love how excited you are to go and learn. Sophie is pretty sure you hung the moon and so am I. You are such a kind, sensitive, strong, smart little guy and it is my privilege to watch you grow and grow. The next year will be just as amazing. I can't wait till our next adventure, an Amtrak ride to Chicago!
Friday, January 16, 2009
Thursday, January 15, 2009
Down syndrome and Windpipes
Sophie had her first meeting with our area pediatric lung specialist. He's our new ologist, pulmonologist that is. He listened to Sophie's chest as well as encouraged her to talk so that he could hear her voice. She coughed a few times and although my ear hears congestion, he still hears a bit of the bark. We played our recording of the latest battle with croup and he listened closely, calling her cough a seal bark. He spoke of stridor (the sound of the struggle to inhale).
Then we got a science lesson that went a little like this: Children with Down syndrome have midface hypoplasia, macroglossia, a narrow nasopharynx, and a shortened palate. (Translation = little face, little parts) These anatomical abnormalities along with generalized hypotonia (low muscle tone), an immature immune system, and a tendency to obesity predispose children with Down syndrome to upper airway obstruction. Gastroesophageal reflux disease (GERD) and chronic lung disease are also common in these children and may worsen airway problems. He went on to discuss the problem of sleep apnea, especially as she gets older.
Asking how Sophie's cough tends to come on, we described symptoms of a cold for a day - 1.5 days, then her cough changes from congestion to the seal bark, getting worse over the next day, croup for 3-4 ish days with a cold remaining for a week or more after croup. We discussed her meds, first a tablet, Dexamethasone 4 MG crushed, to cover 72 hours. Then Predisolone SOD PHOS 5MG/5ML SOL, 9 ML twice daily (liquid). We asked about a nebulizer with Pulmicort. We won't yet be making any decisions on treatment for future cases of croup.
Our next lesson was a mathematical formula about breathing, pressure, and radius of the windpipe that I won't even try and repeat. The message is simple; a very, very small change to the size of the windpipe can have dramatic changes to breathing. A typical adult's windpipe radius, is 16 times greater at moving air than a small child's. When you add the possibility of an already smaller than typical windpipe, anything that restricts the size can make a big difference. Inflammation from a cold virus, trunk hypotonia (that low tone business again) or 'floppiness' of the cartilage or airway itself (malacia), you can have problems. I asked if it was common to have the malacia when symptoms only present with a virus (meaning the cough only comes with a cold, not all the time) and he said, yes. My own research has lead to learning about laryngomalacia, pharyngomalacia, supraglottoplasty, and tracheotomies, but I'm getting way ahead of myself.
Dr. Lung needs to see what we're dealing with, so the next step is a pediatric flexible bronchoscopy which will be done in a week at our local hospital. I overheard him with his scheduler who informed him that he didn't have an opening next week and he said, make one. Move the conflict to my lunch hour. She's had 4 significant episodes in 2 months time.
So it goes, after midnight, no food or water. Check in at 8:30am, procedure at 10am lasting about an hour plus wake up time. Sophie will have her feet and hands numbed with a topical solution so that they can place the IV. The IV will keep her hydrated as well as deliver meds (I forgot to write down what he listed). She will be deeply sedated but not put completely out, meaning she will be doing her own breathing, some moving around or even crying with no memory. He reviewed her heart issues (small PDA a year ago and echo scheduled for next month) and is unconcerned as he cannot hear a murmur, which hopefully means it has closed on it's own. They will monitor HB, breathing, BP, O2 and give extra oxygen. They will also numb her airways.
A small instrument will go down her nose or in her mouth to look at Sophie's throat, voice box, windpipe, and smaller breathing passages of the lungs. There is no incision, this is commonly done, and is quite safe. He will be looking for any anomalies such as inhaled foreign object, tumors, and shape and size of her breathing parts. He told us to expect her waking up time to be an hour and likely she'll be sent home the same day. If she doesn't come off the sedation well or if he sees something he doesn't like, she'll stay overnight.
Once we know what we're dealing with, then we'll come up with a treatment plan. Mark's mom is coming up to hang with Alexander. It's the first week of classes so Mark can't be there. If you're local and want to hang with me in the waiting area, let me know.
As I reminded Mark, nothing has changed because of this consult or the procedure. We'll simply have more information in a week with a better idea of how to treat her when the coughing starts. And then we move forward.
Then we got a science lesson that went a little like this: Children with Down syndrome have midface hypoplasia, macroglossia, a narrow nasopharynx, and a shortened palate. (Translation = little face, little parts) These anatomical abnormalities along with generalized hypotonia (low muscle tone), an immature immune system, and a tendency to obesity predispose children with Down syndrome to upper airway obstruction. Gastroesophageal reflux disease (GERD) and chronic lung disease are also common in these children and may worsen airway problems. He went on to discuss the problem of sleep apnea, especially as she gets older.
Asking how Sophie's cough tends to come on, we described symptoms of a cold for a day - 1.5 days, then her cough changes from congestion to the seal bark, getting worse over the next day, croup for 3-4 ish days with a cold remaining for a week or more after croup. We discussed her meds, first a tablet, Dexamethasone 4 MG crushed, to cover 72 hours. Then Predisolone SOD PHOS 5MG/5ML SOL, 9 ML twice daily (liquid). We asked about a nebulizer with Pulmicort. We won't yet be making any decisions on treatment for future cases of croup.
Our next lesson was a mathematical formula about breathing, pressure, and radius of the windpipe that I won't even try and repeat. The message is simple; a very, very small change to the size of the windpipe can have dramatic changes to breathing. A typical adult's windpipe radius, is 16 times greater at moving air than a small child's. When you add the possibility of an already smaller than typical windpipe, anything that restricts the size can make a big difference. Inflammation from a cold virus, trunk hypotonia (that low tone business again) or 'floppiness' of the cartilage or airway itself (malacia), you can have problems. I asked if it was common to have the malacia when symptoms only present with a virus (meaning the cough only comes with a cold, not all the time) and he said, yes. My own research has lead to learning about laryngomalacia, pharyngomalacia, supraglottoplasty, and tracheotomies, but I'm getting way ahead of myself.
Dr. Lung needs to see what we're dealing with, so the next step is a pediatric flexible bronchoscopy which will be done in a week at our local hospital. I overheard him with his scheduler who informed him that he didn't have an opening next week and he said, make one. Move the conflict to my lunch hour. She's had 4 significant episodes in 2 months time.
So it goes, after midnight, no food or water. Check in at 8:30am, procedure at 10am lasting about an hour plus wake up time. Sophie will have her feet and hands numbed with a topical solution so that they can place the IV. The IV will keep her hydrated as well as deliver meds (I forgot to write down what he listed). She will be deeply sedated but not put completely out, meaning she will be doing her own breathing, some moving around or even crying with no memory. He reviewed her heart issues (small PDA a year ago and echo scheduled for next month) and is unconcerned as he cannot hear a murmur, which hopefully means it has closed on it's own. They will monitor HB, breathing, BP, O2 and give extra oxygen. They will also numb her airways.
A small instrument will go down her nose or in her mouth to look at Sophie's throat, voice box, windpipe, and smaller breathing passages of the lungs. There is no incision, this is commonly done, and is quite safe. He will be looking for any anomalies such as inhaled foreign object, tumors, and shape and size of her breathing parts. He told us to expect her waking up time to be an hour and likely she'll be sent home the same day. If she doesn't come off the sedation well or if he sees something he doesn't like, she'll stay overnight.
Once we know what we're dealing with, then we'll come up with a treatment plan. Mark's mom is coming up to hang with Alexander. It's the first week of classes so Mark can't be there. If you're local and want to hang with me in the waiting area, let me know.
As I reminded Mark, nothing has changed because of this consult or the procedure. We'll simply have more information in a week with a better idea of how to treat her when the coughing starts. And then we move forward.
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