Today (yesterday at this point) has been long and hard for Ollie, Mommy and Daddy. Ollie had a difficult day with congestion and breathing, and Bekka and Shelby (Ollie's nurse today) had a long long day trying to keep his sats up. CoughAssist, Suction, nebulizer, CoughAssist, more suction, more CoughAssist. Even with oxygen they were having a very hard time keeping his numbers where they needed to be.
Bekka called me at 3pm and told me I should probably come home and they were calling the EMS (for the 2nd time in 4 days!). This time we made the decision to go to Duke. He stayed pretty stable on O2 and EMS whisked him away to Duke ER.
After consulting with his pulmonologist, the decision was made to admit him to the hospital. He is in the Pediactric Intensive Care Unit tonight. They have him hooked up to a bi-pap machine in the hopes that oxygen will not be necessary during the night. He is expected to be in the hospital for several days (Monday was thrown around as a goal to go home). Given the number of episodes he has experienced recently despite our very diligent secretion management, they really want to observe and monitor the little guy for several days. He may have had an acute virus or he may just be experiencing a more rapid progression of SMA symptoms.
We thank you for your continued thoughts and prayers as these last few days have really struck home that Bekka and I have important decisions to make.
Not a single one of them is easy. Not a single one of them is pleasant.
Showing posts with label CoughAssist. Show all posts
Showing posts with label CoughAssist. Show all posts
Wednesday, July 8, 2009
Sunday, July 5, 2009
Of ER visits and Mommy's Broken Elbow
So last night was a bit eventful.
Ollie had a great day on Saturday - his numbers were good and he was a chatty little guy. Then evening arrived.
After a simple diaper change and being turned over, he began to get the distressed look he often has when breathing becomes difficult. No big deal. We deal with this all the time. Well, this was definitely not a normal event. We cough-assisted and suctioned and even used a bit of blow-by oxygen to keep his numbers reasonable. Even after 45 minutes, without the O2 he would drop immediately to dangerously low saturation levels. When it got to the point that he was dropping even with oxygen, we called 911.
Raleigh FD and Wake County EMS responded with their usual rapidity. These fantastic folks always listen carefully and do their best to understand Ollie's special condition. So we get him loaded up in the ambulance and they are streaming a bit of oxygen and he's doing pretty well. Bekka thinks it's possible she dislodged the worst of the mucus plug just before we loaded him up.
We thought about going to Duke as that is where his doctors are, but learned an important lesson: The Wake County Ambulances do not have pure sine wave inverters. This type of inverter produces power identical to house current rather than the square wave or modified sine wave of the cheap inverters people often use in their car. We've been researching the best inverter/battery/charger combos out there so we would have portable power for all his equipment, but we hadn't bought anything yet (that's about to change!). Without the cough assist, we decided we needed to go ahead to WakeMed since it's so much closer (and they really have a wonderful pediatric ER).
So off we go to WakeMed with mommy in the ambulance and daddy following. It's not exactly routine, but we are pretty comfortable with the process. Our arrival at WakeMed is when it became a bit more complicated.
The EMTs unloaded Ollie from the ambulance and were headed inside. Bekka handed me the cough assist and went out the side door of the vehicle. I suggested we should hurry as they were wheeling Ollie inside.
That's when she tripped over the unpainted concrete bump/stop the ambulances back up to to unload.
She went down hard. Real hard.
Being super-mommy/super-trooper, she dusted herself off and limped into the ER. At first, everything seemed alright and we were focused on getting Oliver stabilized and x-rayed. Once that was accomplished (a big kudos to Barry the Wonder Nurse and all the staff at WakeMed) and Oliver was clearly doing well we had a doctor look at Bekka. He didn't think anything major was wrong, but was concerned enough to have her left elbow x-rayed. I was worried because it had gotten very stiff as the evening wore on.
So Bekka had an x-ray in the kiddy room (apparently the biggest patient the tech had ever seen, lol). When the x-rays came back, it was very apparent Bekka had a fracture at the tip of the radius bone in her elbow. It wasn't broken off, thankfully. The doctor ordered a rigid splint for her to go home in and referred her to the Orthopedics department. She'll need to visit them this week to find out if anything else will need to be done.
Her right arm is doing pretty well - it hurts when she moves it and grip is reduced, but is more functional than the left. If it doesn't get better over the next day or 2, she'll need to have it checked out in more detail when she sees the orthopedist.
As it is, she's going to be the one-armed mommy trying to do a job that can keep TWO people busy. We hopefully we'll be ramping up nursing assistance for Ollie soon, cross your fingers!!!
We got home about 6am. Man are we tired.
Ollie had a great day on Saturday - his numbers were good and he was a chatty little guy. Then evening arrived.
After a simple diaper change and being turned over, he began to get the distressed look he often has when breathing becomes difficult. No big deal. We deal with this all the time. Well, this was definitely not a normal event. We cough-assisted and suctioned and even used a bit of blow-by oxygen to keep his numbers reasonable. Even after 45 minutes, without the O2 he would drop immediately to dangerously low saturation levels. When it got to the point that he was dropping even with oxygen, we called 911.
Raleigh FD and Wake County EMS responded with their usual rapidity. These fantastic folks always listen carefully and do their best to understand Ollie's special condition. So we get him loaded up in the ambulance and they are streaming a bit of oxygen and he's doing pretty well. Bekka thinks it's possible she dislodged the worst of the mucus plug just before we loaded him up.
We thought about going to Duke as that is where his doctors are, but learned an important lesson: The Wake County Ambulances do not have pure sine wave inverters. This type of inverter produces power identical to house current rather than the square wave or modified sine wave of the cheap inverters people often use in their car. We've been researching the best inverter/battery/charger combos out there so we would have portable power for all his equipment, but we hadn't bought anything yet (that's about to change!). Without the cough assist, we decided we needed to go ahead to WakeMed since it's so much closer (and they really have a wonderful pediatric ER).
So off we go to WakeMed with mommy in the ambulance and daddy following. It's not exactly routine, but we are pretty comfortable with the process. Our arrival at WakeMed is when it became a bit more complicated.
The EMTs unloaded Ollie from the ambulance and were headed inside. Bekka handed me the cough assist and went out the side door of the vehicle. I suggested we should hurry as they were wheeling Ollie inside.
That's when she tripped over the unpainted concrete bump/stop the ambulances back up to to unload.
She went down hard. Real hard.
Being super-mommy/super-trooper, she dusted herself off and limped into the ER. At first, everything seemed alright and we were focused on getting Oliver stabilized and x-rayed. Once that was accomplished (a big kudos to Barry the Wonder Nurse and all the staff at WakeMed) and Oliver was clearly doing well we had a doctor look at Bekka. He didn't think anything major was wrong, but was concerned enough to have her left elbow x-rayed. I was worried because it had gotten very stiff as the evening wore on.
So Bekka had an x-ray in the kiddy room (apparently the biggest patient the tech had ever seen, lol). When the x-rays came back, it was very apparent Bekka had a fracture at the tip of the radius bone in her elbow. It wasn't broken off, thankfully. The doctor ordered a rigid splint for her to go home in and referred her to the Orthopedics department. She'll need to visit them this week to find out if anything else will need to be done.
Her right arm is doing pretty well - it hurts when she moves it and grip is reduced, but is more functional than the left. If it doesn't get better over the next day or 2, she'll need to have it checked out in more detail when she sees the orthopedist.
As it is, she's going to be the one-armed mommy trying to do a job that can keep TWO people busy. We hopefully we'll be ramping up nursing assistance for Ollie soon, cross your fingers!!!
We got home about 6am. Man are we tired.
Wednesday, June 3, 2009
Mommy's Technical Notes re: ER visits
When we first started researching SMA, just before Oliver's "official" diagnosis, I remember reading different sites - university web sites, FSMA, various blogs - and wondering to myself what all these different terms and numbers all meant. What is a de-sat? Why is it important to have a pulse ox? For that matter, what is a pulse ox?
As we've walked along our SMA path, we've vowed to not only give Oliver the best care that we can but to also re-pay the SMA community: to "mentor" other families much like we were; to answer as many questions for our friends and family as we could; to raise awareness of the disease; and to raise awareness about carrier testing.
This post - the one you are currently reading - is meant to help answer some of those questions. We've told you about our ER trips and Ollie's fondness for riding in the ambulance. (He's a little boy, after all, and they like vehicles that go fast, drive on medians, and make loud "woo wooo wooo" sounds, right?) But how do we know when to suction or do CoughAssist? And when do we decide to call 911? And why does Ollie need to go to the ER so often? (Please feel free to ask us any other questions you may have. We're happy to answer them.)
So, we've been to the ER three times. On April 8th, the pediatrician's office called the ambulance for me. Our second visit was on May 4th after a routine visit to Duke to see the neurologist. And our most recent visit on May 29th. All three visits are likely due to mucus plugs - a fairly common malady for folks with SMA. Since SMA weakens the muscles used to breathe and to cough, small amounts of mucus - that unaffected people would just cough and clear - build up in SMA patients and clog a portion of the lung. In severe cases this can result in a partial collapse of the lung.
When we have these little adventures to the ER, they are usually precipitated by oxygen desaturations (often called de-sats). In Oliver's case, his baseline (or normal) oxygen saturations are between 97 and 100 percent at rest and between 95 and 98 percent when asleep. If he is awake and his sats drop below 95, we can usually bring them back up with some suctioning and CoughAssist. Dropping to 95 isn't usually a panic situation.
Everyone's sats vary at different times. When you sleep, your sats will decrease because all the muscles in your body relax - including the muscles that help you breathe. At night, when Oliver is asleep, he will often de-sat into the mid to upper 80s and his pulse ox will alarm. (The settings are adjustable on his pulse ox. We have it set to alarm if his oxygen drops below 90 or if his heart rate rises above 200 beats per minute.) This may happen only once a night or it may happen repeatedly. Usually, he will drop long enough for the alarm to sound once (or maybe twice) and then he'll bounce right back into the 90s. Sometimes it will sound more than once or twice and it takes turning his head or rubbing his leg to get him to take deeper breaths and bring his sats back up. Occasionally, we may even have to wake him to do CoughAssist or to suction.
If his sats drop and his heart rate rises at the same time, it's a pretty good indication that he's distressed. Each time we've gone to the ER, his sats have dropped into the 70s (or lower) and all of the CoughAssist and suctioning we've done haven't brought him back into the 90s. Right before the first ER visit, from the pediatrician's office, we were getting sats of mid to upper 60s when they called 911. By the time the ambulance arrived, the pediatrician had done quite a bit of suctioning and Oliver's sats were in the upper 70s.
The second trip by ambulance to the ER was right after we had gotten back from Duke to see Dr. Smith, Oliver's neurologist. Ollie had been sounding raspy while we were at the appointment. I'd done several rounds of suctioning. I checked his sats and suctioned a little - to be on the safe side - right before we got in the car to head home. Oliver slept the entire ride home.
When I got him out of the car, he was obviously distressed. His little face was covered in beads of sweat. He looked at me with concern in his eyes. I took him in the house and hooked up his pulse ox. I was expecting a reading of low 90s or maybe upper 80s. Nope. He was registering in the 70s. I did CoughAssist and suctioned repeatedly and only got him "stablized" into the mid-80s. My dear friend, Cathy, got to make the 911 call that time.
The third ER visit Neil has told you all about in his post. Will it be the last trip to the ER? Probably not. As his SMA progresses, all of Oliver's muscles will continue to get weaker....including the ones used to breath and to cough. In spite of all of our "drama", we consider ourselves very fortunate. The only hospitalization Ollie has had was for his g-tube and Nissen surgery. And, so far, he's not had a collapsed lung. Many families are not as lucky.
As we've walked along our SMA path, we've vowed to not only give Oliver the best care that we can but to also re-pay the SMA community: to "mentor" other families much like we were; to answer as many questions for our friends and family as we could; to raise awareness of the disease; and to raise awareness about carrier testing.
This post - the one you are currently reading - is meant to help answer some of those questions. We've told you about our ER trips and Ollie's fondness for riding in the ambulance. (He's a little boy, after all, and they like vehicles that go fast, drive on medians, and make loud "woo wooo wooo" sounds, right?) But how do we know when to suction or do CoughAssist? And when do we decide to call 911? And why does Ollie need to go to the ER so often? (Please feel free to ask us any other questions you may have. We're happy to answer them.)
So, we've been to the ER three times. On April 8th, the pediatrician's office called the ambulance for me. Our second visit was on May 4th after a routine visit to Duke to see the neurologist. And our most recent visit on May 29th. All three visits are likely due to mucus plugs - a fairly common malady for folks with SMA. Since SMA weakens the muscles used to breathe and to cough, small amounts of mucus - that unaffected people would just cough and clear - build up in SMA patients and clog a portion of the lung. In severe cases this can result in a partial collapse of the lung.
When we have these little adventures to the ER, they are usually precipitated by oxygen desaturations (often called de-sats). In Oliver's case, his baseline (or normal) oxygen saturations are between 97 and 100 percent at rest and between 95 and 98 percent when asleep. If he is awake and his sats drop below 95, we can usually bring them back up with some suctioning and CoughAssist. Dropping to 95 isn't usually a panic situation.
Everyone's sats vary at different times. When you sleep, your sats will decrease because all the muscles in your body relax - including the muscles that help you breathe. At night, when Oliver is asleep, he will often de-sat into the mid to upper 80s and his pulse ox will alarm. (The settings are adjustable on his pulse ox. We have it set to alarm if his oxygen drops below 90 or if his heart rate rises above 200 beats per minute.) This may happen only once a night or it may happen repeatedly. Usually, he will drop long enough for the alarm to sound once (or maybe twice) and then he'll bounce right back into the 90s. Sometimes it will sound more than once or twice and it takes turning his head or rubbing his leg to get him to take deeper breaths and bring his sats back up. Occasionally, we may even have to wake him to do CoughAssist or to suction.
If his sats drop and his heart rate rises at the same time, it's a pretty good indication that he's distressed. Each time we've gone to the ER, his sats have dropped into the 70s (or lower) and all of the CoughAssist and suctioning we've done haven't brought him back into the 90s. Right before the first ER visit, from the pediatrician's office, we were getting sats of mid to upper 60s when they called 911. By the time the ambulance arrived, the pediatrician had done quite a bit of suctioning and Oliver's sats were in the upper 70s.
The second trip by ambulance to the ER was right after we had gotten back from Duke to see Dr. Smith, Oliver's neurologist. Ollie had been sounding raspy while we were at the appointment. I'd done several rounds of suctioning. I checked his sats and suctioned a little - to be on the safe side - right before we got in the car to head home. Oliver slept the entire ride home.
When I got him out of the car, he was obviously distressed. His little face was covered in beads of sweat. He looked at me with concern in his eyes. I took him in the house and hooked up his pulse ox. I was expecting a reading of low 90s or maybe upper 80s. Nope. He was registering in the 70s. I did CoughAssist and suctioned repeatedly and only got him "stablized" into the mid-80s. My dear friend, Cathy, got to make the 911 call that time.
The third ER visit Neil has told you all about in his post. Will it be the last trip to the ER? Probably not. As his SMA progresses, all of Oliver's muscles will continue to get weaker....including the ones used to breath and to cough. In spite of all of our "drama", we consider ourselves very fortunate. The only hospitalization Ollie has had was for his g-tube and Nissen surgery. And, so far, he's not had a collapsed lung. Many families are not as lucky.
Friday, April 24, 2009
A Quick Update
Hey folks,
Due to the lack of recent posts, we've had a few queries and just wanted everyone to know that Ollie is doing OK. He's generally been great since the ER trip - but we've been extra vigilant.
The pulmonologist thinks he had a cold for a couple of weeks which lead to the excessive and thicker secretions that led to the ER. Post ER, it was a bit rough with constant cough assist and suction for about a week. My poor sister happened to be here helping out during the last few days and can attest to the challenge of keeping him clear. She did a wonderful job with her favorite nephew ;)
Overall, he's been breathing and sleeping well. He did give Bekka a small scare the other day, but it was NOTHING like the day of the ER trip AND she had all the equipment since she was at home. Being SuperMom, she took care of everything. She was a little "nerve-racked" by the time I got home, but little guy was doing great. It's amazing what you can do when you have to. It's also amazing how quick Ollie is to flash a smile even after being tortured with his equipment. He's such a forgiving and happy little fellow - I think we could all learn a lesson from that.
We *promise* we'll get new pics up on Picasa soon - we have a few exceptionally cute ones (but don't we always).
Due to the lack of recent posts, we've had a few queries and just wanted everyone to know that Ollie is doing OK. He's generally been great since the ER trip - but we've been extra vigilant.
The pulmonologist thinks he had a cold for a couple of weeks which lead to the excessive and thicker secretions that led to the ER. Post ER, it was a bit rough with constant cough assist and suction for about a week. My poor sister happened to be here helping out during the last few days and can attest to the challenge of keeping him clear. She did a wonderful job with her favorite nephew ;)
Overall, he's been breathing and sleeping well. He did give Bekka a small scare the other day, but it was NOTHING like the day of the ER trip AND she had all the equipment since she was at home. Being SuperMom, she took care of everything. She was a little "nerve-racked" by the time I got home, but little guy was doing great. It's amazing what you can do when you have to. It's also amazing how quick Ollie is to flash a smile even after being tortured with his equipment. He's such a forgiving and happy little fellow - I think we could all learn a lesson from that.
We *promise* we'll get new pics up on Picasa soon - we have a few exceptionally cute ones (but don't we always).
Friday, March 20, 2009
We need a bigger house....
Don't get me wrong. I'm grateful for all of the supplies that are arriving on my doorstep - bottles of formula, feeding bags, tubing, etc. But it all arrives in bulk; one month's worth of supplies at a time.
Our house was "cozy" before Oliver arrived. For nearly nine months, we worked at cleaning out closets. We reorganized to make more room. We bought a small storage shed. And when Oliver arrived in August, our house became a little "cramped" with teeny clothes, play mats, swings, diapers and such.
Then, in December, the equipment began arriving. At first, just a CoughAssist and a pulse oximeter. Neither had much in the way of additional supplies (or "consumables" as the insurance company likes to call them). Then we got a couple good-sized boxes of SimplyThick to add to the breast milk. Then we switched to formula with the SimplyThick added.
In February, the newest addition to our equipment family arrived: a nebulizer. And several little boxes of albuterol to go with it. A mask or two. Some tubing. A makeshift adapter with a T-connection so Ollie could have his treatments while lying down. We'd gone from a little cramped to surrendering the coffee table to the equipment family.
We got home from the hospital on Tuesday with a couple of patient belonging bags with 5mL and 3mL syringes to flush the tubing for his feeds. Several Y-site extension tubes to make it easier to administer medicines via g-tube. A couple of 60mL syringes to vent his g-tube and give feeds via gravity. A few bags to hang feeds in case we got a pump.
Then Wednesday rolls around. The home medical equipment and supply company delivers a Kangaroo Joey feeding pump with small backpack. More feed bags. A pole to hang the feeds and mount the pump.
Today, a box of 30 feed bags arrives. Along with more Y-site extensions. Plus four cases of ready to feed formula. And one can of powdered formula. The tubing that runs from Oliver's Bard button to the Y-site extension tube hasn't even arrived yet.
Our house was "cozy" before Oliver arrived. For nearly nine months, we worked at cleaning out closets. We reorganized to make more room. We bought a small storage shed. And when Oliver arrived in August, our house became a little "cramped" with teeny clothes, play mats, swings, diapers and such.
Then, in December, the equipment began arriving. At first, just a CoughAssist and a pulse oximeter. Neither had much in the way of additional supplies (or "consumables" as the insurance company likes to call them). Then we got a couple good-sized boxes of SimplyThick to add to the breast milk. Then we switched to formula with the SimplyThick added.
In February, the newest addition to our equipment family arrived: a nebulizer. And several little boxes of albuterol to go with it. A mask or two. Some tubing. A makeshift adapter with a T-connection so Ollie could have his treatments while lying down. We'd gone from a little cramped to surrendering the coffee table to the equipment family.
We got home from the hospital on Tuesday with a couple of patient belonging bags with 5mL and 3mL syringes to flush the tubing for his feeds. Several Y-site extension tubes to make it easier to administer medicines via g-tube. A couple of 60mL syringes to vent his g-tube and give feeds via gravity. A few bags to hang feeds in case we got a pump.
Then Wednesday rolls around. The home medical equipment and supply company delivers a Kangaroo Joey feeding pump with small backpack. More feed bags. A pole to hang the feeds and mount the pump.
Today, a box of 30 feed bags arrives. Along with more Y-site extensions. Plus four cases of ready to feed formula. And one can of powdered formula. The tubing that runs from Oliver's Bard button to the Y-site extension tube hasn't even arrived yet.
Friday, March 13, 2009
Smiling Ollie
After a nice dinner, Bekka went back to the PICU to find a grinning Ollie-Bear awaiting her return. He's tolerating the bi-pap reasonably well and even managed to work in a little binky time while they had the mask off to conduct the cough assist and before they placed it back on.
Too bad for the little guy that he can't do both at the same time :(
Too bad for the little guy that he can't do both at the same time :(
Wednesday, February 18, 2009
Our Visit with the Pediatric Surgeon
So we were hoping to meet with the surgeon and schedule a date to have all 3 procedures done - the G-tube, Nissen, and Botox injections. (See previous post.) The surgeon, however, is concerned about doing all 3 at once since that would mean Ollie would be under anesthesia for almost 2 hours: 30 minutes for the G-tube, 45 for the Nissen and another 30 for the Botox. The fear with SMA is that if you intubate (which is necessary while under anesthesia) you may not be able to extubate.
We're now trying to consult with an otolaryngologist about the Botox and whether it can be done without the anesthesia. Or whether the Nissen is a must-have with the G-tube. Basically, we're trying to pick 2 of the 3 procedures which means finding another way to do the 3rd choice or not doing the 3rd choice at all. More research and more questions for doctors and other SMA families.
On the way home from the consult with the pediatric surgeon, Ollie was sounding rather raspy and was unhappy about being in the car seat. As I was driving, I would be looking at traffic and then looking at Ollie in the mirror. Back and forth, back and forth. About half way back to the house, I decided to pull off the highway because he just wasn't getting any happier and the more he cries, the more gunk there is to suction out of his mouth with the blue bulb syringe. I had hoped to just suction his mouth, calm him and get back to driving. But there was soooo much stuff in his mouth. I ended up letting my friend drive us home while I sat in the back seat suctioning most of the way to the house. (Thank you, Cathy, for remembering how to drive a stick shift.)
I felt bad for the little guy but it was also a bit scary. Was it caused by a cold? Is it his SMA causing the extra saliva and mucus? Will he be able to travel in his regular car seat much longer? What do we get for the car if he can't? So many questions....
We made it home and I hurried him into the house and fired up the good ol' CoughAssist. Honestly, though, once he was lying flat on the floor he began to sound better. We did a couple rounds of the CoughAssist and I turned him on his side to let any extra saliva run out of his mouth. And then he smiled. A great big smile. As if to say thanks, Mama.
So since he's got the extra congestion in his nose, we're going with the cold. We had noticed a day or two ago that there was a little bit of color to his mucus. (Sorry, folks, this isn't a clean disease either. The words mucus and secretions are part of the daily vocabulary.) I called his pediatrician at every number I could find for her. She called me back and we talked about over the counter meds and antibiotics and humidifiers and saline drops. And she called a prescription in for some amoxicillin. (BTW, have I mentioned that we love Dr. Goodmon before?)
Poor Oliver...he's gonna be seeing a lot more of his friends CoughAssist and bulb syringe for a while.
We're now trying to consult with an otolaryngologist about the Botox and whether it can be done without the anesthesia. Or whether the Nissen is a must-have with the G-tube. Basically, we're trying to pick 2 of the 3 procedures which means finding another way to do the 3rd choice or not doing the 3rd choice at all. More research and more questions for doctors and other SMA families.
On the way home from the consult with the pediatric surgeon, Ollie was sounding rather raspy and was unhappy about being in the car seat. As I was driving, I would be looking at traffic and then looking at Ollie in the mirror. Back and forth, back and forth. About half way back to the house, I decided to pull off the highway because he just wasn't getting any happier and the more he cries, the more gunk there is to suction out of his mouth with the blue bulb syringe. I had hoped to just suction his mouth, calm him and get back to driving. But there was soooo much stuff in his mouth. I ended up letting my friend drive us home while I sat in the back seat suctioning most of the way to the house. (Thank you, Cathy, for remembering how to drive a stick shift.)
I felt bad for the little guy but it was also a bit scary. Was it caused by a cold? Is it his SMA causing the extra saliva and mucus? Will he be able to travel in his regular car seat much longer? What do we get for the car if he can't? So many questions....
We made it home and I hurried him into the house and fired up the good ol' CoughAssist. Honestly, though, once he was lying flat on the floor he began to sound better. We did a couple rounds of the CoughAssist and I turned him on his side to let any extra saliva run out of his mouth. And then he smiled. A great big smile. As if to say thanks, Mama.
So since he's got the extra congestion in his nose, we're going with the cold. We had noticed a day or two ago that there was a little bit of color to his mucus. (Sorry, folks, this isn't a clean disease either. The words mucus and secretions are part of the daily vocabulary.) I called his pediatrician at every number I could find for her. She called me back and we talked about over the counter meds and antibiotics and humidifiers and saline drops. And she called a prescription in for some amoxicillin. (BTW, have I mentioned that we love Dr. Goodmon before?)
Poor Oliver...he's gonna be seeing a lot more of his friends CoughAssist and bulb syringe for a while.
Wednesday, February 11, 2009
Reality Check
A month is a long time in the life of an SMA baby. That point was driven home recently when Bekka and I suddenly realized how different life in February is from life in January.
On Janurary 11th, the cough assist machine was a suggestion. We would sometimes give him a treatment a couple of times a day just for practice and therapeutic purposes - but he didn't really need it. On February 11th, the cough assist is no longer an option, it's a way of life. We don't wonder if he needs a treatment, we wonder how often.
The blue bulb syringe - Ollie's great nemesis in life - used to be a once or twice a day annoyance. Sometimes during feeding, sometimes just because he was rattling a bit. Now it's a many times a day event. (Who's counting anymore?)
And now we have a nebulizer. Happily, it really seems to help him breathe a little easier and loosens congestion up, but we surely didn't need such a thing a month ago.
All the info on SMA and all the stories from other parents tell you that 6 months is often a turning point when life gets harder and the road gets rougher. When everything is going well, you say to yourself, "Hey, this isn't so bad. Little guy is doing great!". Then you find yourself preparing for a consult about a feeding tube and wondering whether a car ride is such a good idea because he might get choked up.
February 5 was six months.
Reality can be a harsh mistress
Pulmonary Visit - Feb. 6, 2009
Yes, we need to get this blog up and running! We have been sidetracked by Ollie's cuteness - at least that's our story. Perhaps we can get it up this week. Once it is functional we'll even be able to email updates from our phones.
Info from Ollie's Pulmonary Visit with Dr. Kravitz on February 6, 2009:
Info from Ollie's Pulmonary Visit with Dr. Kravitz on February 6, 2009:
- Breathing function was decreased but still within normal limits.
- When they administered a breathing treatment, it caused a lot of mucus to be expelled. As a result, they've added a nebulizer to the machines we have for Ollie. Thankfully, the amount of stuff we are getting up is getting less after each treatment.
- We are to continue the CoughAssist twice a day (or more as needed) and the nebulizer at least once a day and no more than 4 times.
- We are to monitor his pulse and oxygen saturations with his pulse oximeter once or twice a day.
- After discussions with the neurologist and pulmonologist, we have scheduled a consultation with Dr. Henry Rice, a pediatric surgeon, (currently scheduled for next week on February 18) to schedule a gastronomy tube (G-Tube) placement with the Nissen fundoplication to minimize the risks of reflux and aspiration.
- In the meantime, we are also supposed to evaluate his secretion levels (they are already quite high) and they will consider performing Botox injections to slow them down. Apparently, this is beginning to prove more effective than drying agent drugs and doesn't have the side effect of thickening saliva and mucus, meaning a mucus plug in the throat or trachea is less likely to occur.
- We are scheduled to see the pulmonologist in 2 months (appointment is set for April 3rd), or sooner if anything changes dramatically in Ollie's condition.
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