A business trip took me away from home last Tuesday (4/6). I was a little worried about leaving 5 month pregnant Bekka and the little guys in her belly alone for 3 days, but everything looked great! She'd had a 20 week ultrasound that indicated the babies were healthy and growing and generally just frolicking away their time in the womb. On 4/5, she'd been to the OB and everything was looking solid. So I went to Dallas without much worry at all.
The workshop was very productive and enjoyable, but on the way back, things began to get complicated. Storms in Atlanta (how I hate that airport) were backing up all flights and my flight out of DFW didn't leave for 2 hours and only after 3 gate changes. The only good news was that my flight to Raleigh was equally delayed because the same crew was flying us home. After 3 more gate changes, we finally boarded. I'd turned my phone off around 12:30am (this would be early Friday morning at this point) as we were preparing to pull away when it suddenly rang (HOW?). It was Dave trying to reach me. I thought he might just be razzing me for being so late, but after 3 tries to connect, we finally did and Bekka was immediately on the phone.
Dave was at my house.
Bekka sounded calm but scared.
This isn't good.
And it wasn't.
While going to the bathroom that night, Bekka noticed an unusual amount of blood. All women get a bit of spotting here and there during pregnancy but this was more than that. Further, there was something protruding that "felt and looked like a bouncy ball." She knew immediately it was her amniotic sac and went to lie down. She called the OB, EMS and Dave. Because our OB works out of Cary, Bekka had the EMS take her to WakeMed Cary.
While waiting for the EMS to arrive, she had Dave call me. So I'm stuck in a tin can at the crappiest airport in America, my wife might be losing her pregnancy and I know it's going to be 2 or 3 hours before I can see her.
I do not recommend this.
I finally made it to the hospital at about 3:30am. Bekka was resting (somewhat) comfortably with her feet higher than her head. I now know this is the Trendelenberg Position. At this point, it did not appear that the amniotic sac had ruptured, but it was still protruding from the cervix when she was examined. This was in a effort to get the amniotic sac to withdraw on it's own back into the uterus.
Thus began our up and down saga of the last few days.
Much of this has been posted on Facebook and via email, so some of you know what is going on, but suffice it to say that a risky but non-optional emergency cerclage was required on Sunday morning, as she was about 7cm dilated. The operation involved using a balloon catheter to push the amniotic sac back into the cervix and slowly, incrementally stitching it closed. Bekka has slowly improved over the last day and a half after experiencing pulmonary edema after surgery. Leakage of fluid also seems to have slowed greatly.
The little girl lost a lot of fluid from her amniotic sac (it is guessed through a leak high on the amniotic sac as the doctor could not see an obvious rupture). The little boy's amniotic sac appears to be intact and full. Both of them have maintained strong heartbeats and we hope that the little girl's sac will heal and refill as amniotic fluid is critical for lung development in tiny babies.
Right now the biggest risks are the onset of premature labor (Bekka is receiving meds to slow/prevent this) and infection. With a ruptured sac and the protrusion into the outside world, contamination is a great danger and any infection can spread from baby to baby and to the mother. She is on two types of antibiotics to fight the infection danger.
24 weeks of gestation is considered the cutoff for preterm survival with a reasonable chance of avoiding brain damage and major physical handicaps. The babies will be 23 weeks tomorrow (4/13). We will be trying to get transferred to a hospital with a full Level 3/Level 4 NICU at the end of this week. Such a facility offers the best chance of healthy survival in case she delivers. In this area, that is WakeMed (main hospital), Duke and UNC. Obviously, the best case is that everyone does fantastically well and we can get way beyond 24 weeks. Full term delivery is very very unlikely, but getting anywhere near 30 greatly increases survival chances and infant health.
So:
Emergency Cerclage
Low fluid level in the little girl's sac
Normal fluid level in the boy's amniotic sac
Currently stable and holding
High risk of infection
High risk of early labor
Thank you all for the prayers and love that have come our way. We never imagined we'd have to call on our community of family and friends so soon and certainly did not want it to be in this way.
Stay tuned here for postings as things progress. We are not in a good place, but given the situation, it's as good as it could be.
Showing posts with label EMS. Show all posts
Showing posts with label EMS. Show all posts
Tuesday, April 13, 2010
Wednesday, July 8, 2009
Ollie's in the PICU
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.
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.
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.
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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