We have applied for the CAP-C program which should get us Medicaid assistance for Oliver's medical bills - including equipment. While my insurance is quite good all things considered, it has a "durable medical equipment" (DME) cap of $700 a year. We will max out our DME coverage early next month. Then we'll be responsible for 100% of the cost - currently around $650 a month.
Cross your fingers that CAP-C approves us and moves us to (near) the top of the wait list! Oliver is considered "medically fragile" and his condition has changed (g-tube feeds only). Hopefully that will help.
Monday, March 30, 2009
Tuesday, March 24, 2009
Silly Ollie!
Since Ollie's two bottom teeth broke through, he hasn't been sleeping as well. A couple of nights ago I rocked him for about an hour in the middle of the night. If I tried to get up to lay him in his crib, he'd scrunch up his brow and fuss at me.
Well, last night he slept much better. No middle of the night awakenings. However, at 6am, he decided he wanted to get out of the crib. He wasn't sleepy anymore. He was ready to be up and play. Mama, on the other hand, was not. (I have mentioned that I am not a morning person, right?)
So, Ollie and I headed to the guest bed. (Daddy needs his sleep so that he can go to work and earn money so that we can be denied Social Security and Medicaid.) Grandpa and Grandma sent Ollie a portable DVD player. Ollie watched Baby Einstein. And Mama got some much needed sleep.
Ah, technology...ya gotta love it!
Well, last night he slept much better. No middle of the night awakenings. However, at 6am, he decided he wanted to get out of the crib. He wasn't sleepy anymore. He was ready to be up and play. Mama, on the other hand, was not. (I have mentioned that I am not a morning person, right?)
So, Ollie and I headed to the guest bed. (Daddy needs his sleep so that he can go to work and earn money so that we can be denied Social Security and Medicaid.) Grandpa and Grandma sent Ollie a portable DVD player. Ollie watched Baby Einstein. And Mama got some much needed sleep.
Ah, technology...ya gotta love it!
Friday, March 20, 2009
We need a bigger house....
Don't get me wrong. I'm grateful for all of the supplies that are arriving on my doorstep - bottles of formula, feeding bags, tubing, etc. But it all arrives in bulk; one month's worth of supplies at a time.
Our house was "cozy" before Oliver arrived. For nearly nine months, we worked at cleaning out closets. We reorganized to make more room. We bought a small storage shed. And when Oliver arrived in August, our house became a little "cramped" with teeny clothes, play mats, swings, diapers and such.
Then, in December, the equipment began arriving. At first, just a CoughAssist and a pulse oximeter. Neither had much in the way of additional supplies (or "consumables" as the insurance company likes to call them). Then we got a couple good-sized boxes of SimplyThick to add to the breast milk. Then we switched to formula with the SimplyThick added.
In February, the newest addition to our equipment family arrived: a nebulizer. And several little boxes of albuterol to go with it. A mask or two. Some tubing. A makeshift adapter with a T-connection so Ollie could have his treatments while lying down. We'd gone from a little cramped to surrendering the coffee table to the equipment family.
We got home from the hospital on Tuesday with a couple of patient belonging bags with 5mL and 3mL syringes to flush the tubing for his feeds. Several Y-site extension tubes to make it easier to administer medicines via g-tube. A couple of 60mL syringes to vent his g-tube and give feeds via gravity. A few bags to hang feeds in case we got a pump.
Then Wednesday rolls around. The home medical equipment and supply company delivers a Kangaroo Joey feeding pump with small backpack. More feed bags. A pole to hang the feeds and mount the pump.
Today, a box of 30 feed bags arrives. Along with more Y-site extensions. Plus four cases of ready to feed formula. And one can of powdered formula. The tubing that runs from Oliver's Bard button to the Y-site extension tube hasn't even arrived yet.
Our house was "cozy" before Oliver arrived. For nearly nine months, we worked at cleaning out closets. We reorganized to make more room. We bought a small storage shed. And when Oliver arrived in August, our house became a little "cramped" with teeny clothes, play mats, swings, diapers and such.
Then, in December, the equipment began arriving. At first, just a CoughAssist and a pulse oximeter. Neither had much in the way of additional supplies (or "consumables" as the insurance company likes to call them). Then we got a couple good-sized boxes of SimplyThick to add to the breast milk. Then we switched to formula with the SimplyThick added.
In February, the newest addition to our equipment family arrived: a nebulizer. And several little boxes of albuterol to go with it. A mask or two. Some tubing. A makeshift adapter with a T-connection so Ollie could have his treatments while lying down. We'd gone from a little cramped to surrendering the coffee table to the equipment family.
We got home from the hospital on Tuesday with a couple of patient belonging bags with 5mL and 3mL syringes to flush the tubing for his feeds. Several Y-site extension tubes to make it easier to administer medicines via g-tube. A couple of 60mL syringes to vent his g-tube and give feeds via gravity. A few bags to hang feeds in case we got a pump.
Then Wednesday rolls around. The home medical equipment and supply company delivers a Kangaroo Joey feeding pump with small backpack. More feed bags. A pole to hang the feeds and mount the pump.
Today, a box of 30 feed bags arrives. Along with more Y-site extensions. Plus four cases of ready to feed formula. And one can of powdered formula. The tubing that runs from Oliver's Bard button to the Y-site extension tube hasn't even arrived yet.
Wednesday, March 18, 2009
Happiness
We are home! Oliver was discharged last night around 6:30pm.
Home again, home again, jiggity jig!
It's funny how much I thought I missed my bed, but it was really my pillows and my sheets that I missed more!
We are soooooo happy to be home!
Home again, home again, jiggity jig!
It's funny how much I thought I missed my bed, but it was really my pillows and my sheets that I missed more!
We are soooooo happy to be home!
Tuesday, March 17, 2009
Disappointment
Oliver had his swallow study done at 3pm. He got about 4 bites of applesauce mixed with barium (so we could watch on the videofluoroscope). The speech therapist stopped the feeding and began to massage his cheeks and throat. And then she stopped the study all together.
SMA causes muscles to weaken over time. Muscles like those used to swallow. Oliver would try to swallow the applesauce, but a lot of "residue" would remain at the back of his throat. When he would inhale a breath, the residue would be sucked into his windpipe and hit the top of his vocal cords. Any residue that enters the windpipe is considered aspirated and, if it enters the lungs, can cause pneumonia.
The recommendation from the speech therapist was to discontinue oral feeds. She was very sympathetic and told me how much she hated having to tell me that news. We watched the recorded video together and she showed me where the food had penetrated the windpipe as well as where food had entered Oliver's nasal passages. I asked her if she thought this was due to the Nissen or the post-op or SMA. She didn't even hesitate. It's the SMA progressing.
That was the first real blow since we've been in the hospital. Everything had been progressing nicely. And our goal had always been to continue oral feeds after the g-tube surgery. Especially since Ollie loves sweet potatoes and blueberry applesauce! Instead, SMA has stripped away another layer of normalcy.
SMA causes muscles to weaken over time. Muscles like those used to swallow. Oliver would try to swallow the applesauce, but a lot of "residue" would remain at the back of his throat. When he would inhale a breath, the residue would be sucked into his windpipe and hit the top of his vocal cords. Any residue that enters the windpipe is considered aspirated and, if it enters the lungs, can cause pneumonia.
The recommendation from the speech therapist was to discontinue oral feeds. She was very sympathetic and told me how much she hated having to tell me that news. We watched the recorded video together and she showed me where the food had penetrated the windpipe as well as where food had entered Oliver's nasal passages. I asked her if she thought this was due to the Nissen or the post-op or SMA. She didn't even hesitate. It's the SMA progressing.
That was the first real blow since we've been in the hospital. Everything had been progressing nicely. And our goal had always been to continue oral feeds after the g-tube surgery. Especially since Ollie loves sweet potatoes and blueberry applesauce! Instead, SMA has stripped away another layer of normalcy.
Happy St. Patrick's Day!
I still need a bit more sleep, but I think I'll be a smidgen more coherent in this post. =)
Ollie had a 90mL feed at 10-ish. We'll do a 100mL feed around noon and then at 3pm we'll go downstairs for a swallow study. I'm hopeful he'll do well with that so that we can start giving him bottles and baby food again. I can tell Oliver's ready for oral feeding again. He gobbled up the Tylenol he got by mouth earlier! Mmmm...grape infant Tylenol...yum, yum, yum....
One of the other things that we got to do yesterday was new doctor education. Duke is a teaching hospital and, as I've said before, I'm a-okay with that. When the residents came through yesterday with the teaching doctor, Ollie and I gave them a primer on SMA. It's somewhat theraputic to relate Oliver's story. And Ollie was a great little example. The residents got to see his concave chest (pectus excavatum), high-arched palate, tongue fasiculations and lack of deep tendon reflexes. As usual, he was a charmer. Hopefully his big, blue eyes and big personality will leave a lasting impression on those four residents.
Well, I think Ollie's good and asleep now. So I'm going to take this opportunity to nap!
Ollie had a 90mL feed at 10-ish. We'll do a 100mL feed around noon and then at 3pm we'll go downstairs for a swallow study. I'm hopeful he'll do well with that so that we can start giving him bottles and baby food again. I can tell Oliver's ready for oral feeding again. He gobbled up the Tylenol he got by mouth earlier! Mmmm...grape infant Tylenol...yum, yum, yum....
One of the other things that we got to do yesterday was new doctor education. Duke is a teaching hospital and, as I've said before, I'm a-okay with that. When the residents came through yesterday with the teaching doctor, Ollie and I gave them a primer on SMA. It's somewhat theraputic to relate Oliver's story. And Ollie was a great little example. The residents got to see his concave chest (pectus excavatum), high-arched palate, tongue fasiculations and lack of deep tendon reflexes. As usual, he was a charmer. Hopefully his big, blue eyes and big personality will leave a lasting impression on those four residents.
Well, I think Ollie's good and asleep now. So I'm going to take this opportunity to nap!
Busy Day
Whew.
I am trying to process all that has happened today and my brain and body are just so tired. I'll attempt to give you a quick run down now and a more detailed post tomorrow.
Oliver is still doing fabulously well. His incision is healing nicely and his Bard button is doing well. He is now receiving formula via g-tube. Every three hours they increase the amount by 10mL and decrease his IV by 1mL. He was seen by a speech therapist and occupational therapist today. He took 2 ounces of thickened Pedialyte and about 4 spoonfuls of peaches. Oliver was ecstatic to be eating with his mouth again! Everything looked good so we'll be doing a swallow study tomorrow afternoon. And hopefully - cross your fingers - we'll be able to go home sometime after the swallow study.
While Ollie was in the PICU, they swabbed his nose to check for the presence of MRSA. Today we found out that his swab was positive. Now don't freak out on me. It's not that big of a deal. But it does mean that all visitors including doctors and nurses have to put on a disposable gown and gloves.
I'll post more later. Right now I've got to get to bed and get some rest.
I am trying to process all that has happened today and my brain and body are just so tired. I'll attempt to give you a quick run down now and a more detailed post tomorrow.
Oliver is still doing fabulously well. His incision is healing nicely and his Bard button is doing well. He is now receiving formula via g-tube. Every three hours they increase the amount by 10mL and decrease his IV by 1mL. He was seen by a speech therapist and occupational therapist today. He took 2 ounces of thickened Pedialyte and about 4 spoonfuls of peaches. Oliver was ecstatic to be eating with his mouth again! Everything looked good so we'll be doing a swallow study tomorrow afternoon. And hopefully - cross your fingers - we'll be able to go home sometime after the swallow study.
While Ollie was in the PICU, they swabbed his nose to check for the presence of MRSA. Today we found out that his swab was positive. Now don't freak out on me. It's not that big of a deal. But it does mean that all visitors including doctors and nurses have to put on a disposable gown and gloves.
I'll post more later. Right now I've got to get to bed and get some rest.
Sunday, March 15, 2009
Still Progressing Beautifully
Folks, it may seem as if we're trying to deny you posts. I assure you, though, that is not the case. Things are just rolling along so smoothly that there's not much to report. As Gary Gnu would say, "No gnews is good gnews."
Oliver is sleeping right now and I plan to join him very soon. I asked the nurse to give him a dose of Tylenol every four hours through the night so that he (and I) can rest well. Tomorrow we'll get back to Tylenol as needed.
Thank you again to each and every one of you for the prayers on Oliver's behalf. Please keep them coming and please add my father to them. I know my mom is disappointed that she's not here to help, but I also know she is the best person to care for my father.
Good night!
Oliver is sleeping right now and I plan to join him very soon. I asked the nurse to give him a dose of Tylenol every four hours through the night so that he (and I) can rest well. Tomorrow we'll get back to Tylenol as needed.
Thank you again to each and every one of you for the prayers on Oliver's behalf. Please keep them coming and please add my father to them. I know my mom is disappointed that she's not here to help, but I also know she is the best person to care for my father.
Good night!
How smart is my boy?
So smart that he waited until he could get to the hospital and have morphine before he decided to cut not one, but two, new teeth!
So very smart....
So very smart....
Teef!
In a bit of fun news, Ollie now has his two front center teeth. They've cut through the gums sometime since yesterday, so they aren't full fledged yet but they have a running start. We'll have to watch our fingers now...
Shhhhh. Asweep...
Mama and baby are both sleeping beautifully right now. It's good (great!) for both of them. Everything is still going superbly today. Ollie is doing great without morphine - what a little trooper - and seems to be tolerating the increasing quantities through his g-tube wonderfully.
As of now, it looks like we will be here at least through Tuesday. Tomorrow, they'll be showing us how to conduct a bolus feed (we hope not to need a pump for him, it would be a lot more convenient to feed as needed). He won't be able to take oral feedings until we have another swallow study done to make sure everything is working OK after the Nissen. That may happen before we leave the hospital or we may have to come back a couple of days later. You can tell the little fella wants to drink something, but now that the feeding volume through his tube is up, he doesn't seem to be acting as hungry anymore.
Once again, thanks everyone for the vibes and prayers you've been sending our way. And thanks to my parents for helping out so much over the weekend (Spring cleaning! That's just too much guys!).
Please also keep Rebekka's parents in your prayers. Her mom was supposed to visit to help with Ollie, but Bekka's father has had a bad time of it the last few days. I know they need the good vibes as much as we do. I know it's hard being so far away sometimes.
Until later...
As of now, it looks like we will be here at least through Tuesday. Tomorrow, they'll be showing us how to conduct a bolus feed (we hope not to need a pump for him, it would be a lot more convenient to feed as needed). He won't be able to take oral feedings until we have another swallow study done to make sure everything is working OK after the Nissen. That may happen before we leave the hospital or we may have to come back a couple of days later. You can tell the little fella wants to drink something, but now that the feeding volume through his tube is up, he doesn't seem to be acting as hungry anymore.
Once again, thanks everyone for the vibes and prayers you've been sending our way. And thanks to my parents for helping out so much over the weekend (Spring cleaning! That's just too much guys!).
Please also keep Rebekka's parents in your prayers. Her mom was supposed to visit to help with Ollie, but Bekka's father has had a bad time of it the last few days. I know they need the good vibes as much as we do. I know it's hard being so far away sometimes.
Until later...
Saturday, March 14, 2009
A Quick Post
Well, we're in our own room now. We moved to the 5100 wing around 8pm. Ollie and I have settled in for the night.
Everyone in the PICU was amazed at how quickly Ollie has been progressing. One of the respiratory therapists said that he was surprised at how little time Oliver spent on bipap and at how well he had been doing off of the bipap.
Ollie is continuing to receive g-tube feedings. Right now we've switched from formula to Pedialyte and we're gradually increasing the amount he's getting. We started out at 5mL per hour. That was upped to 7mL per hour. Four hours later it was increased to 9mL per hour and once four more hours pass it'll be bumped to 11mL. He'll continue to receive IV fluids while getting the tube feedings. As the tube feeds increase, the IV fluids will decrease.
In other news, I finally got my shower today. Yea for clean hair and a change of clothes! The only disappointment we've had is that the Ronald McDonald House Family Room for parents of pediatric patients has been closed during most of our stay. It is run by volunteers and they've had issues getting it staffed the past few days. So I didn't get access to a shower until we got our own room.
That's all for now...it's way past my bedtime! =)
Everyone in the PICU was amazed at how quickly Ollie has been progressing. One of the respiratory therapists said that he was surprised at how little time Oliver spent on bipap and at how well he had been doing off of the bipap.
Ollie is continuing to receive g-tube feedings. Right now we've switched from formula to Pedialyte and we're gradually increasing the amount he's getting. We started out at 5mL per hour. That was upped to 7mL per hour. Four hours later it was increased to 9mL per hour and once four more hours pass it'll be bumped to 11mL. He'll continue to receive IV fluids while getting the tube feedings. As the tube feeds increase, the IV fluids will decrease.
In other news, I finally got my shower today. Yea for clean hair and a change of clothes! The only disappointment we've had is that the Ronald McDonald House Family Room for parents of pediatric patients has been closed during most of our stay. It is run by volunteers and they've had issues getting it staffed the past few days. So I didn't get access to a shower until we got our own room.
That's all for now...it's way past my bedtime! =)
Three Cheers!
We are SO pleased with Ollie's progress. He had two chest x-rays overnight and both look great. He was weaned off of the bipap around 10-ish this morning. Once bipap was off, his pacifier went in! He was such a happy fellow to have his paci back. =) He's also been getting g-tube feedings since about 9am. Right now it's being done pretty slowly - just 5mL per hour. But it's still a big step.
Oliver has kept his oxygen saturations up since getting off of the bipap. If he keeps progressing this well, he'll likely get a regular room sometime this afternoon. Yay!
We've been fortunate to have good doctors, respiratory therapists, nurses, etc. Our main nurses have been Amy and Melissa. They have done a great job looking after our Ollie and looking after us, too. They even pulled a reclining chair beside Ollie's bed so that I could snooze a bit during the night. I probably managed about 3 or 4 hours of sleep last night plus an hour "nap" in the cafeteria this morning. Yes, I said the cafeteria. During rounds, patients aren't allowed any visitors. So I headed to the cafeteria around 8am for breakfast. I found a booth to eat in and it was situated where I could lean against a wall, prop my legs and feet on the bench, rest my head on the seat back, and snooze. Do you think I might have been a wee bit tired?
I leave you with two Swedish proverbs that we have found to be quite true:
Oliver has kept his oxygen saturations up since getting off of the bipap. If he keeps progressing this well, he'll likely get a regular room sometime this afternoon. Yay!
We've been fortunate to have good doctors, respiratory therapists, nurses, etc. Our main nurses have been Amy and Melissa. They have done a great job looking after our Ollie and looking after us, too. They even pulled a reclining chair beside Ollie's bed so that I could snooze a bit during the night. I probably managed about 3 or 4 hours of sleep last night plus an hour "nap" in the cafeteria this morning. Yes, I said the cafeteria. During rounds, patients aren't allowed any visitors. So I headed to the cafeteria around 8am for breakfast. I found a booth to eat in and it was situated where I could lean against a wall, prop my legs and feet on the bench, rest my head on the seat back, and snooze. Do you think I might have been a wee bit tired?
I leave you with two Swedish proverbs that we have found to be quite true:
Thank you all so very much for keeping us in your thoughts and prayers."Shared joy is a double joy; shared sorrow is half a sorrow."and"Friendship doubles our joy and divides our grief."
Friday, March 13, 2009
An Update from the Mama
Well, as ya'll have noticed most of the recent posts have been from the Daddy. The Mama was standing by Ollie's "crib," singing lullabies and songs, and stroking his little hands and feet. But after dinner, my legs and feet were ready for a little break!
The closest I've been to tears today is when we came back from dinner. Oliver had just gotten a dose of morphine before I walked into the room. He's was resting and looking so angelic. I began to rub that chubby little hand of his again and told him how much I loved him and how proud I was of him. He opened those big blue eyes and from behind that big ol' bipap mask he smiled his big ol' toothless grin. He smiled so big that his eyes were smiling too. I am constantly amazed at how sweet he can be. And how forgiving as well.
We could all learn a lot from that baby boy.
The closest I've been to tears today is when we came back from dinner. Oliver had just gotten a dose of morphine before I walked into the room. He's was resting and looking so angelic. I began to rub that chubby little hand of his again and told him how much I loved him and how proud I was of him. He opened those big blue eyes and from behind that big ol' bipap mask he smiled his big ol' toothless grin. He smiled so big that his eyes were smiling too. I am constantly amazed at how sweet he can be. And how forgiving as well.
We could all learn a lot from that baby boy.
Smiling Ollie
After a nice dinner, Bekka went back to the PICU to find a grinning Ollie-Bear awaiting her return. He's tolerating the bi-pap reasonably well and even managed to work in a little binky time while they had the mask off to conduct the cough assist and before they placed it back on.
Too bad for the little guy that he can't do both at the same time :(
Too bad for the little guy that he can't do both at the same time :(
Extubation is successful so far!
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.
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.
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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