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.
Showing posts with label mucus plug. Show all posts
Showing posts with label mucus plug. Show all posts
Sunday, July 5, 2009
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.
Saturday, April 11, 2009
Ollie Goes to the ER
So little man gave us a scare this week.
AND had his first ambulance ride.
Around 3:20pm on Wednesday (4/8) I see that Bekka is ringing my cell, never expecting that she's about to say "Ollie is in distress and the pediatrician's office has called an ambulance".
She had taken little guy to get his last RSV shot. By the time she arrived at the pediatrician's office, he was clearly having difficulty breathing. The staff at the office (they really are wonderful!) jumped right into action and began suctioning to try to remove secretions and mucus. Unfortunately, it just wasn't really helping and they ended up calling an ambulance.
I met Bekka at the WakeMed Children's ER around 4. We immediately requested a cough assist as it is a highly effective device for removing mucus plugs. Luckily, before it even arrived Bekka and I managed to get the vast majority of the mucus plug out. Over the next few hours, they took X-rays and blood samples to make sure he was OK and we did several rounds of cough assist and suctioning to try and clear up any lingering issues.
We managed to leave at 8:30pm or so and Ollie has been doing well since then.
Ollie, Bekka and I want to send a big thanks to the staff at Raleigh Pediatrics, the fantastic fire and EMS personnel and the ER staff at WakeMed. What could've been a nerve-wracking situation was kept calm and cool by everyone involved.
AND had his first ambulance ride.
Around 3:20pm on Wednesday (4/8) I see that Bekka is ringing my cell, never expecting that she's about to say "Ollie is in distress and the pediatrician's office has called an ambulance".
She had taken little guy to get his last RSV shot. By the time she arrived at the pediatrician's office, he was clearly having difficulty breathing. The staff at the office (they really are wonderful!) jumped right into action and began suctioning to try to remove secretions and mucus. Unfortunately, it just wasn't really helping and they ended up calling an ambulance.
I met Bekka at the WakeMed Children's ER around 4. We immediately requested a cough assist as it is a highly effective device for removing mucus plugs. Luckily, before it even arrived Bekka and I managed to get the vast majority of the mucus plug out. Over the next few hours, they took X-rays and blood samples to make sure he was OK and we did several rounds of cough assist and suctioning to try and clear up any lingering issues.
We managed to leave at 8:30pm or so and Ollie has been doing well since then.
Ollie, Bekka and I want to send a big thanks to the staff at Raleigh Pediatrics, the fantastic fire and EMS personnel and the ER staff at WakeMed. What could've been a nerve-wracking situation was kept calm and cool by everyone involved.
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