Since we all know that the main reason ya'll check in so regularly is to see new pictures, I'll let you know that you can find some here and there. =)
(Edit: And now we have one more set. These were pictures taken almost 3 weeks ago by Nurse Katy at WakeMed when Penny and Isaak moved in together. It's amazing how cute they are and also how different they look! -Neil)
Now on to the update...
Isaak is "eating" again! His g-tube feeds began today around 11am at 2ml per hour continuously. He's been tolerating them well thus far. I think he's still feeling hungry though. Every hour or so he gets pretty riled up for around 5 minutes then settles down again. Sometimes his pacifier helps; sometimes holding him helps. Even though he's in the NICU, he is just a baby with baby needs.
Other exciting news in Isaak's world: poop! While I was changing his diaper this evening, he squirmed and grunted and pooped...right in the nice, clean, fresh diaper. But his nurse and I were so excited we just about did a jig right there. This is great and hopefully there will be more to come.
Penny is nursing well and we are having a sleep over of sorts tonight. They had parent sleep rooms on the floor with a pull out bed and spots to hook up monitors, Neopuff, suction, etc. This will allow me to nurse Penny throughout the evening and night. Eating and gaining weight are really all she needs to master in order to go home. Assuming she does well, we'll introduce her to bottles tomorrow or the next day.
That's your quick update for today. Right now Penny's grunting for me. Happiness!
Showing posts with label Suction. Show all posts
Showing posts with label Suction. Show all posts
Monday, July 19, 2010
Wednesday, May 12, 2010
Weight Gains, Head Ultrasounds and More
I'll go ahead and apologize now for this post in advance. We're both pretty tired. (It's amazing how traveling back and forth to the hospital wears on you.) So tonight's update will be brief.
- Daddy got to hold Isaak tonight! We've got pictures, but they'll have to wait until tomorrow. Isaak was so sweet though. You could tell that he wasn't really able to focus, but he kept opening up his eyes to look up at his daddy. Neil and I have now held both our son and daughter. =)
- Penny now weighs 710 grams. Isaak weighs in at 810 grams. Both are now above their birth weights of 650 grams and 780 grams, respectively. A couple days ago they both hit their exact birth weight on the same day. Could they already be showing us signs of their twin connection?
- The amount of breast milk each is receiving is steadily increasing. Isaak is getting about 8ml every 3 hours and Penny gets 7ml. Assuming they continue to tolerate their feeds well, they will get a slight bump in the amount every 24 hours. If all goes well, they'll be on solely breast milk by the end of next week. (No more IV nutrition!)
- Respiratory wise, Isaak is still the trouble maker. He continues to have several apnea and bradycardia spells each day. Most of the time he self-resolves or needs only mild stimulation to recover. He has been taken off of the SiPAP and placed back on CPAP. The nurses are trying to suction him more frequently since he seems to have more gunk in his nose and throat than his sister does. Penelope has occasional "A's and B's" - as they say in medical parlance - but nearly all of hers are self-resolved. Neil and I have tried to get her to talk with her brother about these things. So far, though, she has refused to set him straight.
- Despite several attempts, there is still no PICC line for Penny. They may have to do just a plain ol' IV for her. Her UVC in her umbilical cord is still in and still working well, but it will need to be taken out soon. After 10 or so days, the risk of infection outweighs the benefits it provides.
- One of the many things that preemies often experience is a bleed in the brain known as an intraventricular hemorrhage (IVH). So last night both Penny and Isaak had a head ultrasound. Penny's showed a mild Grade 1, possibly Grade 2, IVH that was isolated to the right side of her brain. Isaak had a Grade 1 IVH on both the left and right. Short-term and long-term outcomes with Grade 1 or 2 are very good. In fact, most doctors and nurse practitioners that we've spoken with say that there is nothing to be worried about. To be on the safe side, a second head ultrasound will be done in about a week. This is done just to monitor and track the size of the bleed. (Who knows...full-term babies may also have mild IVH's, but they aren't screened for them.)
Thank you all again for the many prayers said on our family's behalf. We sincerely appreciate every one of them.
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.
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).
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