Good news. They successfully extubated the little fella around 5:30 with minimal fuss. The challenge right now is to fit a bi-pap mask! Little people don't often wear them and so they have to adapt larger masks. He seems to be breathing pretty well even between fittings which is great news.
With luck, he'll only need the bipap for a couple of days to fully stabilize. Another big plus with the extubation is they can now provide more serious pain relief. Since morphine and other opiates affect breathing function, they needed to wake him up fully before they could safely medicate. Hopefully it helps him sleep. I know if my stomach had just been wrapped around my esophagus, I'd want some morphine!
They'll be closing the ICU for shift change in a little while. We'll try to grab some dinner and be back with an update after 8pm.
Friday, March 13, 2009
Ollie is in PICU
Little guy is now in his room in the Pediatric ICU. He is doing well and we are waiting on him to wake up so they can try to extubate. His numbers are good and he is sleeping peacefully.
Small Update
The surgeon will be out in just a few to talk with us about the surgery. We'll update you all as soon as we can.
Surgery has begun
We were informed about 10 minutes ago that Oliver's surgery has started. Thank you all so very much for your continued support and prayers!
Ollie is now in Pre-op
The wonderful nurses and anesthesia team just took Ollie back for prep. He was grinning and working his binky for all he was worth. I think he already has a new fan club. Something about those big blue eyes and long eyelashes charm everyone he meets - especially the girls ;)
Thanks everyone for the wonderful emails and texts and phone calls over the last couple of days. The support we have received is fantastic.
We have beautiful friends and family!
Thanks everyone for the wonderful emails and texts and phone calls over the last couple of days. The support we have received is fantastic.
We have beautiful friends and family!
Thursday, March 12, 2009
A bit of info about tomorrow
The surgery should last about an hour and a half. We'll go straight to the PICU (pediatric ICU) after surgery. (No recovery room visit.) Assuming all goes well, we'll spend one night in the PICU and then go to either a regular room or a "step-down" room. I'm hoping for a "step-down" room since it has a better nurse to patient ratio.
Some generic info from the Duke Children's Hospital website:
Please continue to pray for a successful surgery with no complications and a quick recovery!
Some generic info from the Duke Children's Hospital website:
Please continue to pray for a successful surgery with no complications and a quick recovery!
Thanks Amanda B!
Our dear friend Dave is getting married in May. And his wonderful bride takes amazing photos. (She even works part time as a photographer's assistant.) She came over to our house yesterday and we had a little Ollie photo shoot in the backyard. Oh my goodness...the samples that she has shown me are fantastic! Of course, she did have a really cute model... =)
Thank you, Amanda, for taking so many wonderful photos of our little guy. And thank you for letting me share them with the world wide web. I owe ya one.
Thank you, Amanda, for taking so many wonderful photos of our little guy. And thank you for letting me share them with the world wide web. I owe ya one.
Surgery Time is 11:15am
I just received a call from Brenda at Duke. Ollie's surgery with Dr. Rice is scheduled to start at 11:15am (Eastern Time). She said that we need to be there no later than 9:45am. It's nice to know the exact time now. And it's also nice to know we won't have to beat the sun up in the morning! (Those of you who know me know I am in no way, shape or form a morning person! That's why I work retail.)
Another nice thing about a late morning start is that we won't have to wake Ollie up really, really early to give him his last bottle of formula before surgery. Just really early...like 4:30am! He can have clear fluids up until two hours before surgery. Hopefully he likes glucose water with SimplyThick in it!
Another nice thing about a late morning start is that we won't have to wake Ollie up really, really early to give him his last bottle of formula before surgery. Just really early...like 4:30am! He can have clear fluids up until two hours before surgery. Hopefully he likes glucose water with SimplyThick in it!
Monday, March 9, 2009
Case Manager
Hooray! I finally managed to get a case manager assigned to Oliver!
When we got Ollie's diagnosis at Duke in November of 2008, we spoke with a social worker at Lenox-Baker who recommended that we get a case manager at our insurance company to help sort through everything related to Oliver's care. A week or two later, I called the number on the back of my insurance card. When I asked for a case manager, the rep I spoke with told me I'd need a doctor's referral to get one.
Overwhelmed with all the changes in our lives, I put the case manager at the back of my mind. But with Ollie's upcoming surgery, I thought about it again. So I called the pediatrician. (Have I mentioned how marvelous she has been?) She called the insurance company. The rep she spoke to said that I needed to make the request.
So, annoyed but not surprised, I called the insurance company again. This time I was transferred a couple of times but did make it to the "correct" person. And today the phone rang and the magical case manager has been assigned!
She will work with us to get everything we need for Ollie. I've already spent 45 minutes educating her about SMA. =) As soon as Oliver is admitted to the hospital, she will arrange for us to get a "complex case manager."
Hopefully, once I educate both case managers, it won't be as difficult to get approvals for all of Oliver's needs. Plus, I'll only have to deal with the one or two people at the insurance company. I have a phone number that dials our case manager here in North Carolina and the extension that rings the phone at her desk. I feel like I'm on the inside now!
A small victory is mine!
When we got Ollie's diagnosis at Duke in November of 2008, we spoke with a social worker at Lenox-Baker who recommended that we get a case manager at our insurance company to help sort through everything related to Oliver's care. A week or two later, I called the number on the back of my insurance card. When I asked for a case manager, the rep I spoke with told me I'd need a doctor's referral to get one.
Overwhelmed with all the changes in our lives, I put the case manager at the back of my mind. But with Ollie's upcoming surgery, I thought about it again. So I called the pediatrician. (Have I mentioned how marvelous she has been?) She called the insurance company. The rep she spoke to said that I needed to make the request.
So, annoyed but not surprised, I called the insurance company again. This time I was transferred a couple of times but did make it to the "correct" person. And today the phone rang and the magical case manager has been assigned!
She will work with us to get everything we need for Ollie. I've already spent 45 minutes educating her about SMA. =) As soon as Oliver is admitted to the hospital, she will arrange for us to get a "complex case manager."
Hopefully, once I educate both case managers, it won't be as difficult to get approvals for all of Oliver's needs. Plus, I'll only have to deal with the one or two people at the insurance company. I have a phone number that dials our case manager here in North Carolina and the extension that rings the phone at her desk. I feel like I'm on the inside now!
A small victory is mine!
Friday, March 6, 2009
Professional Portraits
A member of the OU Club of Raleigh/Durham nominated us for a portrait giveaway. And we are honored and humbled that we were selected as the grand prize winner. Thank you, Jen, for the nomination and thank you to A Moment Like This for choosing us. (Bianca Palmer, the photographer, also has a blog which has lots of neat portraits she and her husband have taken.)
I'm very excited about our session. Neil and I have tried to take as many videos and pictures as we can. And a few, such as Ollie in his Santa hat, look somewhat professional. I promise to post photos from our session (with Bianca's permission) as soon as possible.
I'm very excited about our session. Neil and I have tried to take as many videos and pictures as we can. And a few, such as Ollie in his Santa hat, look somewhat professional. I promise to post photos from our session (with Bianca's permission) as soon as possible.
Tuesday, March 3, 2009
Surgery has been scheduled...
I'm going to warn you now that this will likely be a bit of a rambling post. (Much like that last sentence...) It's been a long day. We were at Duke from 11:15am until around 2pm. I didn't sleep well last night. I'm tired. And I'm taking a pretty powerful antibiotic to knock out this residual crud in my lungs. Sorry.
So the pre-op appointment went well today. We came in armed with print outs and lots of questions (and statements, too, really). The anesthesia nurse practitioner met with us to go over any health issues as well as surgery and anesthesia issues. We gave her our print outs regarding special considerations for anesthesia with SMA babies and some SMA-specific pre-op and post-op nutrition guidelines. She also noted on Oliver's pre-op report several of our concerns regarding the "best" practices for extubation and the like. They should have a BiPAP machine and mask available for him to use following extubation.
And the date for his surgery is.....drumroll please....next Friday, March the 13th. (I've always like the rarity of Friday the 13th and how considered 13 my "lucky" number for some time now.) We won't know the actual time of the surgery until the night before when we call in to get it.
After the nurse practitioner, we met with a child life specialist. She went over every step of what to expect the day of the surgery: where to check-in, where the waiting room is located, who to ask if there are delays, where Oliver would go for anesthesia, what types of anesthesia might be used (gaseous vs. IV), where the operating room is located, who will be in the operating room during the surgery, where Oliver would go after the surgery. You name it, she covered it. Plus, she answered all of our questions: Can we stay with Oliver in the PICU? Where can we sleep? Is there somewhere to shower? What do we do about meals for us? How many visitors can Oliver have? Where will Oliver go after the PICU? She also physically showed us a G-tube and how it works. She told us suggestions that other families have made regarding this surgery and even what older kids who've had the procedure say about how it feels after the surgery.
I have to say I'm pretty at ease about this decision now. I feel as if we have thought about every possible angle - good, bad, ugly, indifferent. We've done a lot of research and spoken with several different families as well as medical professionals. Everyone at Duke seems to understand that we're the parents and, therefore, we're in charge.
There's one other thing that puts my mind (and stomach) a bit more at ease. Since Ollie is a special little boy with a special little condition, he'll get extra special attention. Cases like his don't happen very often so we'll have surgeons, anesthesiologists, doctors, residents, fellows and nurses observing his surgery. More eyes and ears to watch over him and look out for him in the operating room.
Neil and I have talked together about this before and we're glad that Ollie can help shape future doctors' minds and opinions about SMA.
That's all for now. It's time to get some rest. Please continue to keep us in your thoughts and prayers.
So the pre-op appointment went well today. We came in armed with print outs and lots of questions (and statements, too, really). The anesthesia nurse practitioner met with us to go over any health issues as well as surgery and anesthesia issues. We gave her our print outs regarding special considerations for anesthesia with SMA babies and some SMA-specific pre-op and post-op nutrition guidelines. She also noted on Oliver's pre-op report several of our concerns regarding the "best" practices for extubation and the like. They should have a BiPAP machine and mask available for him to use following extubation.
And the date for his surgery is.....drumroll please....next Friday, March the 13th. (I've always like the rarity of Friday the 13th and how considered 13 my "lucky" number for some time now.) We won't know the actual time of the surgery until the night before when we call in to get it.
After the nurse practitioner, we met with a child life specialist. She went over every step of what to expect the day of the surgery: where to check-in, where the waiting room is located, who to ask if there are delays, where Oliver would go for anesthesia, what types of anesthesia might be used (gaseous vs. IV), where the operating room is located, who will be in the operating room during the surgery, where Oliver would go after the surgery. You name it, she covered it. Plus, she answered all of our questions: Can we stay with Oliver in the PICU? Where can we sleep? Is there somewhere to shower? What do we do about meals for us? How many visitors can Oliver have? Where will Oliver go after the PICU? She also physically showed us a G-tube and how it works. She told us suggestions that other families have made regarding this surgery and even what older kids who've had the procedure say about how it feels after the surgery.
I have to say I'm pretty at ease about this decision now. I feel as if we have thought about every possible angle - good, bad, ugly, indifferent. We've done a lot of research and spoken with several different families as well as medical professionals. Everyone at Duke seems to understand that we're the parents and, therefore, we're in charge.
There's one other thing that puts my mind (and stomach) a bit more at ease. Since Ollie is a special little boy with a special little condition, he'll get extra special attention. Cases like his don't happen very often so we'll have surgeons, anesthesiologists, doctors, residents, fellows and nurses observing his surgery. More eyes and ears to watch over him and look out for him in the operating room.
Neil and I have talked together about this before and we're glad that Ollie can help shape future doctors' minds and opinions about SMA.
That's all for now. It's time to get some rest. Please continue to keep us in your thoughts and prayers.
Sunday, March 1, 2009
Pre-Op Appointment
Well, we have a pre-op appointment on Tuesday at 11:15. I spoke with the pediatric surgeon's scheduling nurse, Marisol, on Friday. She was very nice and took a lot of time to answer my questions. And her answers were reassuring.
The surgeon usually does an open surgery for the Nissen. Marisol said that he often will try to start it laparoscopically but usually ends up doing the open procedure. Especially on a little fellow like Ollie, it's a bit easier to do the open surgery. Fortunately, the hospital stay with the open procedure is normally only 3 to 5 days. I know, I know..."only 3 to 5 days" isn't really a short period of time. But it is so much better than the 1 to 2 week estimate we had gotten from the pulmonologist.
I asked Marisol why a Nissen has become a standard procedure with a G-tube. She said to think of how it feels when you gulp down 20 ounces of water in just a few seconds. You feel really full and somewhat nauseous. When you get a bolus feed, it can feel much the same way. So the Nissen is done to make sure there is no reflux or vomiting that could be aspirated and cause aspiration pneumonia.
I've also chatted with a couple more moms of SMA babies. And they've all reiterated that the G-tube surgery was the best medical decision they made. (Again, a few said they wished that they had done it sooner.)
So, we're doing the pre-op on Tuesday and then we'll likely schedule the G-tube and Nissen surgery. I'm hoping to get all the doctors together - in person or via teleconference - to discuss the special issues related to anesthesia and surgery when a child has SMA.
Please continue to keep us in your thoughts and prayers.
The surgeon usually does an open surgery for the Nissen. Marisol said that he often will try to start it laparoscopically but usually ends up doing the open procedure. Especially on a little fellow like Ollie, it's a bit easier to do the open surgery. Fortunately, the hospital stay with the open procedure is normally only 3 to 5 days. I know, I know..."only 3 to 5 days" isn't really a short period of time. But it is so much better than the 1 to 2 week estimate we had gotten from the pulmonologist.
I asked Marisol why a Nissen has become a standard procedure with a G-tube. She said to think of how it feels when you gulp down 20 ounces of water in just a few seconds. You feel really full and somewhat nauseous. When you get a bolus feed, it can feel much the same way. So the Nissen is done to make sure there is no reflux or vomiting that could be aspirated and cause aspiration pneumonia.
I've also chatted with a couple more moms of SMA babies. And they've all reiterated that the G-tube surgery was the best medical decision they made. (Again, a few said they wished that they had done it sooner.)
So, we're doing the pre-op on Tuesday and then we'll likely schedule the G-tube and Nissen surgery. I'm hoping to get all the doctors together - in person or via teleconference - to discuss the special issues related to anesthesia and surgery when a child has SMA.
Please continue to keep us in your thoughts and prayers.
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