Lately, I've felt like I should sit down and blog. It has been on my "to-do-list" for quite some time, but I can't make myself sit down and do it. I'm reminded of the big term papers in college that I put off and put off then finally sit down and finish page after page, just before a deadline. LOL
Anyway, I have been home bound here with Brock since surgery so I don't really have too many excuses....except that I am tired and have a severe case of Attention Deficit Disorder!
Brock is doing better each day. He slept last night for a complete block of time and allowed me some shut-eye as well! :) His pain seems to be subsiding and transfers are less traumatic. Yesterday, I was brave/crazy enough to try him out in his shower chair. It went ok and he seemed to feel better with a shower (of his upper body at least!), but I know we were both worn out after the event.
The girls are so excited with all the Christmas buzz in the air. A few days of snowfall only added to their giddiness!
Pictures on the blog will come one of these days. I now have quite a list to post:
1. Avery day
2. Cora day
3. Brock's casts
4. Christmas card pics.
Ok, so I am a slacker aren't I?!?!?!?
Until next time........
Friday, December 9, 2011
Thursday, December 1, 2011
Hip Surgery
I've been neglecting the blog lately, but wanted to sign in and give a quick update.
Brock had his hip surgery, Tuesday Nov. 29th. He made it through the 3+ hours of surgery pretty well. We spent 11:45am, until 4:30pm in the PACU (recovery) because PIC (pediatric intermediate care) floor was full! Talk about a long day (after being up since 3am)!!!
After surgery, Brock was denied Valium because I apparently freaked everyone out with the reminder of last year's code blue.... I wish they would have given it because Brock struggled getting on top of his pain and was having many muscle spasms. It was the anesthesiologists decision while we were in PACU, and he kept saying NO. However, the ortho surgeon ordered valium once were had a bed in PIC. Ironically, the hospital had no VALIUM! Sometimes you just have to laugh.....
Morphine and Lortab are the 2 drugs that are managing Brock's pain. Today, Thursday, is a little better. Ever since Brock was out of surgery, his heart rate has been elevated. The first thought was pain, then perhaps dehydration. He was given extra fluids and of course pain meds around the clock. Still, heart rates were hanging out in the 150-160 range and often setting of alarms at 180. There was talk of a blood transfusion if Brock's hemoglobin was low, but the first labs had his hemoglobin level at 8.9. However, repeated labs showed a drop, down to 7.5. So, as I type, Brock is receiving a unit of blood. He will receive a unit of blood over a 4 hour period, and hopefully he responds well.
We don't have any discharge plan in mind yet. He has to have his pain under control, as he can't go home on Morphine and he has to be off the iv fluids. Brock tolerated a partial feed this morning and will work up to his regular diet soon. So far it is quite impressive that he has been satting 95-100 on room air! No oxygen to wean at least.
The casts are predicted to be on 4-6 weeks. Brock will have an appointment in 4 weeks after discharge, and the Dr. can make the decision. He is casted from upper thigh, down to his toes--2 full-leg, blue casts with TWO bars between. I am already intimidated. Last hip surgery he "only" had one bar. This time the upper bar is very high between the legs. Diapering is going to be a nightmare..........
I will do my best to get the blog updated. I still am negligent with posting "Avery Day Observed" pictures.
Until next time......
Brock had his hip surgery, Tuesday Nov. 29th. He made it through the 3+ hours of surgery pretty well. We spent 11:45am, until 4:30pm in the PACU (recovery) because PIC (pediatric intermediate care) floor was full! Talk about a long day (after being up since 3am)!!!
After surgery, Brock was denied Valium because I apparently freaked everyone out with the reminder of last year's code blue.... I wish they would have given it because Brock struggled getting on top of his pain and was having many muscle spasms. It was the anesthesiologists decision while we were in PACU, and he kept saying NO. However, the ortho surgeon ordered valium once were had a bed in PIC. Ironically, the hospital had no VALIUM! Sometimes you just have to laugh.....
Morphine and Lortab are the 2 drugs that are managing Brock's pain. Today, Thursday, is a little better. Ever since Brock was out of surgery, his heart rate has been elevated. The first thought was pain, then perhaps dehydration. He was given extra fluids and of course pain meds around the clock. Still, heart rates were hanging out in the 150-160 range and often setting of alarms at 180. There was talk of a blood transfusion if Brock's hemoglobin was low, but the first labs had his hemoglobin level at 8.9. However, repeated labs showed a drop, down to 7.5. So, as I type, Brock is receiving a unit of blood. He will receive a unit of blood over a 4 hour period, and hopefully he responds well.
We don't have any discharge plan in mind yet. He has to have his pain under control, as he can't go home on Morphine and he has to be off the iv fluids. Brock tolerated a partial feed this morning and will work up to his regular diet soon. So far it is quite impressive that he has been satting 95-100 on room air! No oxygen to wean at least.
The casts are predicted to be on 4-6 weeks. Brock will have an appointment in 4 weeks after discharge, and the Dr. can make the decision. He is casted from upper thigh, down to his toes--2 full-leg, blue casts with TWO bars between. I am already intimidated. Last hip surgery he "only" had one bar. This time the upper bar is very high between the legs. Diapering is going to be a nightmare..........
I will do my best to get the blog updated. I still am negligent with posting "Avery Day Observed" pictures.
Until next time......
Thursday, November 24, 2011
Happy Thanksgiving 2011
Annual Thanksgiving Day Triplet picture. My sis got us this turkey while ABC were spending their 1st Thanksgiving in the NICU. It was that day, some very special nurses "captured" Brock and allowed us our very 1st triplet picture. I know some didn't think Brock would ever make it to have another picture with his siblings...However, 7 years later..... ♥
Happy Thanksgiving!
Happy Thanksgiving!
Tuesday, November 15, 2011
Dread and anticipation
So, Brock's surgery is set for November 29th, at 8:00 a.m. I have instructions to arrive at the hospital (OSF in Peoria), with him, at 6:00 a.m. *Yawn* That makes me tired, just thinking about it......
When Brock was seen by the orthopedic surgeon, I wanted to know if he could get a Baclofen pump at the same time as his hip osteotomy. When I questioned the orthorpedic surgeon, he thought it would be great---if the two surgical teams could coordinate a surgery date. Obviously, getting Brock a Baclofen pump isn't as easy as ordering a side of fries with your meal.
On November 7th, we had an appointment with the neurosurgeon, followed by an appointment with a physical therapist, specializing in the Baclofen pump.
I had read so much about the pump and thought it would be so great for Brock to try. However, my "excitement" quickly dwindled when I heard some complications Brock may encounter. Without boring each of you readers out there, I will try to explain Brock's situation as concisely as possible.
Shortly after birth, Brock suffered two severe brain bleeds, a grade III hemorrhage on the right side, and a grade IV on the left. Because of that, he developed hydrocephalus. However, he was so tiny he wasn't able to get a VP shut and instead he received a Macomb reservoir. The reservoir is a small bulb-like feature that was placed near his ventricle. While in the NICU, doctors were able to "tap" the bulb with a needle and pull off excess CSF (cerebral spinal fluid). Brock's hydrocephalus then resolved, in a sense, and he was never required to have a VP shunt.
BUT..........all this time, Brock's ventricles are still enlarged and filled with CSF. Something that has never been a concern until we addressed the Baclofen pump. The pump has a catheter that is placed intrathecally---into the spinal column. Such a procedure could cause the CSF to puddle at the site and in turn Brock may in fact require a VP shunt. (I am imagining a big body of water that is dammed up, until you make a break in the dam....then you have a flood!) According to the neurosurgeon, this is rare, but he has seen it happen.
Rare?
Brock is the epitome of rare.
If it can happen, it usually does for my boy.
Bummer. All I can think of is surgery, after surgery, and soon I have "Bionic Brock."
The physical therapy evaluation went very well. The PT thought Brock would be a very good candidate for the Baclofen pump. He has mixed tone, with lower tone in his trunk/upper extremities, and increased tone in his legs---especially with movement.
So......One Baclofen pump to go, please. ?
Nope. Brock has some hoops to go through first.
Step 1: Trial of oral Baclofen. Something that I dread, given the potential side effects, such as decreased tone all over, and lowered seizure threshold. In other words, Brock could become a floppy rag doll that has even MORE seizures!
Step 2: "Epidural style" Baclofen trial. This would be an all day (but outpatient) trial. Brock would be given Baclofen that would be injected into his spinal fluid, very similar to women receiving an epidural before childbirth. He would be monitored to see how his tone changed and what side effects he experienced.
Step 3: Catheter Baclofen trial. From the explanation that I received, this is a trial that is most similar to the actual pump system. Depending how Brock would respond to the previous trial, I don't even know if this third step would be necessary.
The plan I am pushing for is to somehow do an oral Baclofen trial while Brock is inpatient after this hip surgery. Baclofen can potentially help manage the post-op spasms and if there are any serious complications Brock would already be in the hospital. We shall see if that happens or not. I already have requested that Brock go to PIC after recovery this time. Brock went to the general peds floor last time and if anyone recalls....... Brock coded when he was given Morphine too close to his Valium dose. Something so FREAKY, yet somehow impressive to see dozens of people rushing into Brock's room with such quick response time.
Scary, nevertheless.
I've been saying that "ignorance is bliss." It is truly the case with Brock's upcoming surgery. Last time, I was dreading it, but I didn't know how it was going to be. Now. I. Know.
The most current information I have is that Brock will be inpatient for 3-4 days and casted for 6 weeks. The casts have really got me scratching my head lately. We did this in the summer last time around and Brock got by with long t-shirts and just had his diaper. It is COLD now. He will be home bound for those 6 weeks anyway so surely I can rig up something.....
As not to leave on a complete downer of a tone, I want to share a link. I made a funny video, using each of our pictures animated on Cardinals baseball players. We each got a kick out of watching it and Avery and Cora still ask to see it over, and over!
Stay tuned for more updates. I hope to get the annual triplet Thanksgiving picture, with their turkey......which reminds me, I should find that storage tote in the garage...... ;)
Until next time.....
When Brock was seen by the orthopedic surgeon, I wanted to know if he could get a Baclofen pump at the same time as his hip osteotomy. When I questioned the orthorpedic surgeon, he thought it would be great---if the two surgical teams could coordinate a surgery date. Obviously, getting Brock a Baclofen pump isn't as easy as ordering a side of fries with your meal.
On November 7th, we had an appointment with the neurosurgeon, followed by an appointment with a physical therapist, specializing in the Baclofen pump.
I had read so much about the pump and thought it would be so great for Brock to try. However, my "excitement" quickly dwindled when I heard some complications Brock may encounter. Without boring each of you readers out there, I will try to explain Brock's situation as concisely as possible.
Shortly after birth, Brock suffered two severe brain bleeds, a grade III hemorrhage on the right side, and a grade IV on the left. Because of that, he developed hydrocephalus. However, he was so tiny he wasn't able to get a VP shut and instead he received a Macomb reservoir. The reservoir is a small bulb-like feature that was placed near his ventricle. While in the NICU, doctors were able to "tap" the bulb with a needle and pull off excess CSF (cerebral spinal fluid). Brock's hydrocephalus then resolved, in a sense, and he was never required to have a VP shunt.
BUT..........all this time, Brock's ventricles are still enlarged and filled with CSF. Something that has never been a concern until we addressed the Baclofen pump. The pump has a catheter that is placed intrathecally---into the spinal column. Such a procedure could cause the CSF to puddle at the site and in turn Brock may in fact require a VP shunt. (I am imagining a big body of water that is dammed up, until you make a break in the dam....then you have a flood!) According to the neurosurgeon, this is rare, but he has seen it happen.
Rare?
Brock is the epitome of rare.
If it can happen, it usually does for my boy.
Bummer. All I can think of is surgery, after surgery, and soon I have "Bionic Brock."
The physical therapy evaluation went very well. The PT thought Brock would be a very good candidate for the Baclofen pump. He has mixed tone, with lower tone in his trunk/upper extremities, and increased tone in his legs---especially with movement.
So......One Baclofen pump to go, please. ?
Nope. Brock has some hoops to go through first.
Step 1: Trial of oral Baclofen. Something that I dread, given the potential side effects, such as decreased tone all over, and lowered seizure threshold. In other words, Brock could become a floppy rag doll that has even MORE seizures!
Step 2: "Epidural style" Baclofen trial. This would be an all day (but outpatient) trial. Brock would be given Baclofen that would be injected into his spinal fluid, very similar to women receiving an epidural before childbirth. He would be monitored to see how his tone changed and what side effects he experienced.
Step 3: Catheter Baclofen trial. From the explanation that I received, this is a trial that is most similar to the actual pump system. Depending how Brock would respond to the previous trial, I don't even know if this third step would be necessary.
The plan I am pushing for is to somehow do an oral Baclofen trial while Brock is inpatient after this hip surgery. Baclofen can potentially help manage the post-op spasms and if there are any serious complications Brock would already be in the hospital. We shall see if that happens or not. I already have requested that Brock go to PIC after recovery this time. Brock went to the general peds floor last time and if anyone recalls....... Brock coded when he was given Morphine too close to his Valium dose. Something so FREAKY, yet somehow impressive to see dozens of people rushing into Brock's room with such quick response time.
Scary, nevertheless.
I've been saying that "ignorance is bliss." It is truly the case with Brock's upcoming surgery. Last time, I was dreading it, but I didn't know how it was going to be. Now. I. Know.
The most current information I have is that Brock will be inpatient for 3-4 days and casted for 6 weeks. The casts have really got me scratching my head lately. We did this in the summer last time around and Brock got by with long t-shirts and just had his diaper. It is COLD now. He will be home bound for those 6 weeks anyway so surely I can rig up something.....
As not to leave on a complete downer of a tone, I want to share a link. I made a funny video, using each of our pictures animated on Cardinals baseball players. We each got a kick out of watching it and Avery and Cora still ask to see it over, and over!
Stay tuned for more updates. I hope to get the annual triplet Thanksgiving picture, with their turkey......which reminds me, I should find that storage tote in the garage...... ;)
Until next time.....
Monday, October 31, 2011
Happy Halloween 2011
Happy Halloween 2011, from my ABC trio! :)
Avery, Brock, and Cora had more than one occasion to dress up for Halloween this year. Cora was the only one not content with wearing the same costume each time. (go figure!) She was a witch, a pop star, and Belle from Disney. I didn't capture a picture of her pop star costume, but if you ask me, that was just fine. LOL :)
The purple witch
Avery kitty
Cowboy Brock
SISTERS!
Triple Trouble
Funny story about the above picture. Sunday night, Avery came into my room exclaiming she couldn't sleep. I suggested she imagine each person from her 1st grade class, then try to guess what Halloween costume each may have. She was satisfied with my suggestion, and said: "I bet my teacher will be a CAT!" You can imagine Avery's excitement, this morning, when she saw her teacher really was a kitty cat, just like her! :) Oh, what a cat lover my Avery is!!!
Avery, Brock, and Cora had more than one occasion to dress up for Halloween this year. Cora was the only one not content with wearing the same costume each time. (go figure!) She was a witch, a pop star, and Belle from Disney. I didn't capture a picture of her pop star costume, but if you ask me, that was just fine. LOL :)
The purple witch
Avery kitty
Cowboy Brock
SISTERS!
Triple Trouble
Funny story about the above picture. Sunday night, Avery came into my room exclaiming she couldn't sleep. I suggested she imagine each person from her 1st grade class, then try to guess what Halloween costume each may have. She was satisfied with my suggestion, and said: "I bet my teacher will be a CAT!" You can imagine Avery's excitement, this morning, when she saw her teacher really was a kitty cat, just like her! :) Oh, what a cat lover my Avery is!!!
One of my nicknames for Cora Belle is "Miss Belle." How fitting, that she dress up as Disney's Belle? (Thanks April for loaning the dress!!) Cora had to get a picture with her student teacher from her 1st grade class. Cora adores her. I'm not looking forward to the day Ms. G. has to leave. :(
******************
This morning, I received a phone call regarding Brock's upcoming surgery. They tentatively have set the date for November 29th. Not the best situation because that happens to be Avery Day! Ugh. Ortho still hasn't confirmed the date with the neurosurgeon, so the date may change. I'll update the blog when I know more details.
Until next time........
Thursday, October 27, 2011
A window of opportunity?
As I watched the leaves of my sugar maple fall, and viewed the cooler forecast, I decided to jump on an opportunity for some pictures. Each kid had a snack after school, then they were told to "quick, go get your Cardinal hoodie!" ;)
There were enough good shots, that make me feel as though I 'captured a moment'. And, if nothing else, I don't feel guilty for not getting the annual fall maple picture. I also really wanted to get a few shots in front of my fall display of straw bales, scarecrow, etc....but the natives were restless and I knew I'd be pushing my luck with a scene change! I hope you enjoy some fall colors with my triple redbirds!
There were enough good shots, that make me feel as though I 'captured a moment'. And, if nothing else, I don't feel guilty for not getting the annual fall maple picture. I also really wanted to get a few shots in front of my fall display of straw bales, scarecrow, etc....but the natives were restless and I knew I'd be pushing my luck with a scene change! I hope you enjoy some fall colors with my triple redbirds!
Wednesday, October 26, 2011
The Ortho appointment....
The much anticipated (dreaded) day was today. The visit with the orthopedic surgeon. My morning was actually going fairly well. I got up early, got myself ready, then all the kiddos.
Mis-match day @ school for Avery and Cora.
As soon as Avery and Cora got on the school bus, I loaded up Brock and was all set to go. So I thought........
Click, click, click. Are you kidding me? A dead battery?!?!?!!? By this time, Jason was on the scene and located the battery charger, hooked me up and I was ready to roll. But, not before Brock had to get a little seizure out of the way. :(
As I was driving to Peoria, I programmed my GPS to get my ETA. (too many acronyms?lol) I discovered that I should "only" be a few minutes late for my 9am appointment. Well, that was before I encountered the dreadful Route 9 construction with not only stoplights, but flaggers with stop signs, this morning. Grrrrrr!
Fully charged with some road rage, I arrived with Brock about 15 minutes late, and checked in. The gal at the desk said Brock was next in line to be called. But, wouldn't you know, we had to wait in the waiting room.....and wait.... A gal came out and called what I thought to be "Brock for Dr. A." I stood up, wheeled Brock and almost ran into a couple......one of which was named "Rick, for Dr. A" Oops! (So much for being next!) That gave me some time to sit back down and to ponder how bad my hearing must be failing me in my old age.......
Once we were finally called back, the nurse did all the pre-doc stuff, then we were left to wait some more in the exam room. Fun times.
Dr. A finally came in and went over Brock's x-ray. The right hip looked good! The left hip, however, is over 50% dislocated and requires surgery to rebuild the acetabulum. I was under the impression ALL that was done with the last osteotomy, but at that time, the left hip was "pretty good" and he did some work on the femoral head and placed some pins and plates in the femur, but didn't fully rebuild Brock's acetabulum (hip socket). --Apparently because the procedures were taking a long time, and the left didn't require extensive repair.
I argued that "simply" rebuilding the hip wasn't going to offer a long term solution, given Brock's high tone in his lower extremities. Dr. said he planned on releasing the adductors (this time on the left), but I asked if Brock would be a good candidate for a Baclofen pump.***(See bottom of posting) He thought yes. So I asked if it all could be done during the one procedure, as to not have 2 separate surgeries?? Dr. didn't see why not.
As of now, we are in a holding pattern so to speak. Ortho will contact Neurosurgery (for Baclofen pump placement) and coordinate a surgery time. I will be notified once there is something scheduled. All I know is that it will be done before the end of the calendar year.
My drive home from the appointment had me on the phone, virtually the entire time, in search of one of Brock's seizure medications. He is on the generic form of Trileptal, Oxcarbazepine. I noticed this morning he was getting low in his last bottle, so I called CVS for a refill. "Sorry, our generic is back ordered until at least December." Seriously? I ended up calling most of the pharmacies in a 60 mile radius and got the same answer each time: "Due to a production shortage, there is only brand name available."
No THANK YOU.
We did brand name a few years ago, until I found out I could get a 90 day supply of generic for $30 vs. $350 for name brand. That higher amount was not sitting well with me today.....especially after having to digest the surgery plan for Brock!
I ended up calling Neurology and leaving a message stating my prescription dilemma. I just received a phone call back from the nurse and was told I have an option of getting generic tablets that I can crush and hopefully make it work for Brock's g-tube. (We currently use tablets for his Topamax, so I am crossing my fingers that it works as well.) :)
I'll be updating the blog when I know more details on the surgery schedule.
Until next time.....
Here is a picture of our sugar maple with its beautiful fall color. This is the tree that we planted when we first moved into this house about 12 years ago. (In years past, I've been able to get triplet pics in front of this.....doesn't look like it this year.)
****Many have asked what a Baclofen pump really is and what it does. I have copied a brief explanation and will paste it below:
Cerebral Palsy Treatments:
Intrathecal baclofen therapy - (ITB) for spasticity
Content Provided by Scope
What is ITB?
Baclofen is a drug produced as a muscle relaxant. It has been used to relieve the stiffness caused by spasticity.
However, when it was taken orally it was found to have many side-effects, including lethargy and loss of balance. In June 1996, the US Food and Drug Administration approved a new system of delivering the drug to people with spastic cerebral palsy, called Intrathecal Baclofen Therapy (ITB). The system is also known as Continuous Intrathecal Baclofen Infusion (CIBI). Baclofen is delivered directly into the spinal fluid by a pump that is implanted under the skin of the abdomen in an operation that lasts about two hours. The pump is the size of an ice hockey puck, but can be easily ‘housed’ in the abdominal cavity. The pump then delivers a small amount of the Baclofen into the spinal fluid via a small tube. A computer turns on the pump and the dose of Baclofen can be adjusted upward or downward, depending on the individual’s response.
How does it work?
By putting the Baclofen directly into the spinal fluid, the drug can act as a muscle relaxant and reduce spasticity in the lower limbs without the side-effects associated with the oral administration of the drug.
The most common side-effects of the Baclofen when delivered by pump include loose muscles, drowsiness, nausea, headache and dizziness. However, these are usually temporary and manageable by adjusting the dose.
The pump itself needs to be refilled typically every two months and this is accomplished by inserting a needle through the skin into the pump. Some clinicians will use a local anaesthetic if necessary for this. The pump will need to be replaced after five or six years.
Mis-match day @ school for Avery and Cora.
As soon as Avery and Cora got on the school bus, I loaded up Brock and was all set to go. So I thought........
Click, click, click. Are you kidding me? A dead battery?!?!?!!? By this time, Jason was on the scene and located the battery charger, hooked me up and I was ready to roll. But, not before Brock had to get a little seizure out of the way. :(
As I was driving to Peoria, I programmed my GPS to get my ETA. (too many acronyms?lol) I discovered that I should "only" be a few minutes late for my 9am appointment. Well, that was before I encountered the dreadful Route 9 construction with not only stoplights, but flaggers with stop signs, this morning. Grrrrrr!
Fully charged with some road rage, I arrived with Brock about 15 minutes late, and checked in. The gal at the desk said Brock was next in line to be called. But, wouldn't you know, we had to wait in the waiting room.....and wait.... A gal came out and called what I thought to be "Brock for Dr. A." I stood up, wheeled Brock and almost ran into a couple......one of which was named "Rick, for Dr. A" Oops! (So much for being next!) That gave me some time to sit back down and to ponder how bad my hearing must be failing me in my old age.......
Once we were finally called back, the nurse did all the pre-doc stuff, then we were left to wait some more in the exam room. Fun times.
Dr. A finally came in and went over Brock's x-ray. The right hip looked good! The left hip, however, is over 50% dislocated and requires surgery to rebuild the acetabulum. I was under the impression ALL that was done with the last osteotomy, but at that time, the left hip was "pretty good" and he did some work on the femoral head and placed some pins and plates in the femur, but didn't fully rebuild Brock's acetabulum (hip socket). --Apparently because the procedures were taking a long time, and the left didn't require extensive repair.
I argued that "simply" rebuilding the hip wasn't going to offer a long term solution, given Brock's high tone in his lower extremities. Dr. said he planned on releasing the adductors (this time on the left), but I asked if Brock would be a good candidate for a Baclofen pump.***(See bottom of posting) He thought yes. So I asked if it all could be done during the one procedure, as to not have 2 separate surgeries?? Dr. didn't see why not.
As of now, we are in a holding pattern so to speak. Ortho will contact Neurosurgery (for Baclofen pump placement) and coordinate a surgery time. I will be notified once there is something scheduled. All I know is that it will be done before the end of the calendar year.
My drive home from the appointment had me on the phone, virtually the entire time, in search of one of Brock's seizure medications. He is on the generic form of Trileptal, Oxcarbazepine. I noticed this morning he was getting low in his last bottle, so I called CVS for a refill. "Sorry, our generic is back ordered until at least December." Seriously? I ended up calling most of the pharmacies in a 60 mile radius and got the same answer each time: "Due to a production shortage, there is only brand name available."
No THANK YOU.
We did brand name a few years ago, until I found out I could get a 90 day supply of generic for $30 vs. $350 for name brand. That higher amount was not sitting well with me today.....especially after having to digest the surgery plan for Brock!
I ended up calling Neurology and leaving a message stating my prescription dilemma. I just received a phone call back from the nurse and was told I have an option of getting generic tablets that I can crush and hopefully make it work for Brock's g-tube. (We currently use tablets for his Topamax, so I am crossing my fingers that it works as well.) :)
I'll be updating the blog when I know more details on the surgery schedule.
Until next time.....
Here is a picture of our sugar maple with its beautiful fall color. This is the tree that we planted when we first moved into this house about 12 years ago. (In years past, I've been able to get triplet pics in front of this.....doesn't look like it this year.)
****Many have asked what a Baclofen pump really is and what it does. I have copied a brief explanation and will paste it below:
Cerebral Palsy Treatments:
Intrathecal baclofen therapy - (ITB) for spasticity
Content Provided by Scope
What is ITB?
Baclofen is a drug produced as a muscle relaxant. It has been used to relieve the stiffness caused by spasticity.
However, when it was taken orally it was found to have many side-effects, including lethargy and loss of balance. In June 1996, the US Food and Drug Administration approved a new system of delivering the drug to people with spastic cerebral palsy, called Intrathecal Baclofen Therapy (ITB). The system is also known as Continuous Intrathecal Baclofen Infusion (CIBI). Baclofen is delivered directly into the spinal fluid by a pump that is implanted under the skin of the abdomen in an operation that lasts about two hours. The pump is the size of an ice hockey puck, but can be easily ‘housed’ in the abdominal cavity. The pump then delivers a small amount of the Baclofen into the spinal fluid via a small tube. A computer turns on the pump and the dose of Baclofen can be adjusted upward or downward, depending on the individual’s response.
How does it work?
By putting the Baclofen directly into the spinal fluid, the drug can act as a muscle relaxant and reduce spasticity in the lower limbs without the side-effects associated with the oral administration of the drug.
The most common side-effects of the Baclofen when delivered by pump include loose muscles, drowsiness, nausea, headache and dizziness. However, these are usually temporary and manageable by adjusting the dose.
The pump itself needs to be refilled typically every two months and this is accomplished by inserting a needle through the skin into the pump. Some clinicians will use a local anaesthetic if necessary for this. The pump will need to be replaced after five or six years.
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