Soooooo....let's see here. I suppose I should update you all on life around these parts. =)
It dawns on me as I review the posts since our last ER trip that Neil and I never told you Oliver's "official" diagnosis: pneumonia possibly due to aspiration (of his own slobber, I guess). Ollie never had a fever per se but we had been dosing him regularly with Tylenol and Motrin to help with his teething. (All four top teeth are trying to break through and have been for a couple weeks. Any minute now I expect to see a chomper on that upper gum.) He just finished his last dose of Augmentin last night. His secretions seem to be back to baseline (i.e., Ollie's version of normal). And he's also back to being his smiley, happy, talkative little self! With SMA, you consider yourself lucky to make it to 11.5 months old before getting your first pneumonia.
My cast came off on Friday 7/24. I may return to light-duty "work" with the restrictions that I should not lift or carry more than 10 pounds (Ollie's over 19 pounds now). I also should not do any repetitive twisting or turning with either hand. Makes for a challenging day, don't ya think? At least I can open my own soda cans again...hooray for small victories! I will be going back for yet another set of x-rays on 8/14. So far, it doesn't look like any surgery is going to be needed.
Due to my injuries, we got a temporary increase in nursing hours through CAP/C. They call them short-term intensive hours; I call them a godsend! We had been getting between 12 and 20 hours per week. Since my fall, we've been getting up to 16 hours a day which usually works out to 10am to 6pm (while Neil is at work) and then 11pm to 7am (overnight - so that everyone can get some rest). With Oliver's pneumonia, this was very helpful since he was getting albuterol treatments, CPT (chest physiotherapy), CoughAssist and suctioning about every four to six hours - including overnight.
Sadly, Grandma headed home yesterday (7/28). We had a great visit. She was a big help getting Oliver's room better organized, keeping the garden watered and harvested, mending clothes, and changing yucky, stinky diapers! Grandma also constructed a puppet show stage (out of a cardboard box) which Ollie and Mama helped to decorate with crayons. Ollie thoroughly enjoyed his Grandma's puppet shows.
I think that is all for now...I better scoot! Have a great day and thank you so much for keeping up with us.
Showing posts with label ER. Show all posts
Showing posts with label ER. Show all posts
Wednesday, July 29, 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.
Monday, June 1, 2009
ER #3
Friday (5/29) proved to be an eventful day, but not in a good way. I arrived home a little early so that Bekka could head out to an appointment. I'd only been home a few minutes when Ollie's sats begin dropping. They very quickly descended into the 70s. Vigorous suction and cough assist managed to get him into the low 80s, but no higher. When he dropped into the 60s before bouncing back into the 80s and after we had been at this for several minutes, we made the call to 911.
By the time the paramedics were here, he was back to around 90, but still sounded horrible. They gave him a hit of supplemental oxygen and we headed out the door. Mom loaded up with Ollie into the ambulance and I followed a little bit later with some of the necessary bags.
By the time, we were all at the hospital and in an ER bay, he seemed to be doing really well. In fact, they were drawing up the discharge papers when his sats crashed again. We got his numbers back up pretty quickly, but his heart rate remained elevated. This is always a sure sign that he is still experiencing respiratory discomfort, even if his sats are in a more normal range.
We requested they send in a respiratory therapist to do deep suctioning. Several rounds of this brought up a large amount of very, very thick (but clear!) mucus. He began to improve slowly and Bekka and I were having discussions with the Doc about admission vs. going on home. The decision was not an easy one and they let us continue hanging out in the ER while we made the decision. Pretty soon, he began to perk up to normal Ollie mode and grinned at Daddy! We knew then we could head home.
In the meantime, members of the WakeMed branch of the Ollie fan club came by to see him. I don't think any parent wants to be a "regular" at their local ER, but it's a comforting feeling to know the nurses like your little fella so much they go out of their way to visit. We've been so impressed with our experiences at WakeMed and with Wake County EMS. We can't begin to offer enough praise for their professionalism AND their compassion.
As of now, we have backed off his Robinul dose (though not completely, as that is not a tenable situation) and are being even more vigilant.
By the time the paramedics were here, he was back to around 90, but still sounded horrible. They gave him a hit of supplemental oxygen and we headed out the door. Mom loaded up with Ollie into the ambulance and I followed a little bit later with some of the necessary bags.
By the time, we were all at the hospital and in an ER bay, he seemed to be doing really well. In fact, they were drawing up the discharge papers when his sats crashed again. We got his numbers back up pretty quickly, but his heart rate remained elevated. This is always a sure sign that he is still experiencing respiratory discomfort, even if his sats are in a more normal range.
We requested they send in a respiratory therapist to do deep suctioning. Several rounds of this brought up a large amount of very, very thick (but clear!) mucus. He began to improve slowly and Bekka and I were having discussions with the Doc about admission vs. going on home. The decision was not an easy one and they let us continue hanging out in the ER while we made the decision. Pretty soon, he began to perk up to normal Ollie mode and grinned at Daddy! We knew then we could head home.
In the meantime, members of the WakeMed branch of the Ollie fan club came by to see him. I don't think any parent wants to be a "regular" at their local ER, but it's a comforting feeling to know the nurses like your little fella so much they go out of their way to visit. We've been so impressed with our experiences at WakeMed and with Wake County EMS. We can't begin to offer enough praise for their professionalism AND their compassion.
As of now, we have backed off his Robinul dose (though not completely, as that is not a tenable situation) and are being even more vigilant.
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).
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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