William's surgery was a complete success. He left me at 11:09 and was wheeled to recovery at 12:06. It took a full hour because the catheter was too long the first time and had to be removed to trim it to size and replace it.
William has two incisions to heal, one on his neck and one on his chest with a little knob under his skin where they will access the port for his infusions. If we are hospitalized again for any reason, they will be able to use the port instead of the IV for most treatments and procedures. That will be wonderful!
William is feeling fine and has not experienced any pain. The anesthesiologist gave him narcotics during the surgery and we were able to dose him with Tylenol with Codeine at home. He is tolerating it all well.
Today was a good day at the hospital for William. Nothing hurt. That's saying a lot.
Friday, December 19, 2008
Thursday, December 18, 2008
William's Surgery is Scheduled
William will have surgery on Friday, Dec 19th at 11am to have a port placed to allow infusions without an IV.
The procedure is fast and "simple." The surgeon said they don't even like to call it an operation because it is so simple. But, being that they will be cutting my 4 year old little boy, I'm a bit nervous. As I understand it, they insert the catheter into the jugular and align it very close to his heart. I'm glad the surgeon is calm about it, but that sure sounds dangerous and scary to me.
The surgeon is wonderful to work with, he has bent over backward to get us in this week to avoid another IV for William. I spoke with the anesthesiologist tonight as well and she is terrific too. There is a chance that she is in-network for our insurance, which would be such a huge blessing as we have met all deductibles and maximums and it would be covered 100% if she is.
William is a little anxious, but only because he doesn't know what to expect. He's mainly focusing on the "no more IVs" good news. When it is his turn, they will give him some "silly juice" to take the edge off before they take him from me to go to the OR. That will be the most difficult part for him. He will breathe in the anesthesia and be asleep in about 20 seconds, after which they will insert an IV for pain medication and any emergency drugs. Recovery time is about 30 minutes and then they will remove the IV and he will be returned to me to recover for another hour before we are sent home.
His first in-office infusion will be on Tuesday with a second dose on Wednesday. We'll get to try out the port then.
Thank you for your prayers.
The procedure is fast and "simple." The surgeon said they don't even like to call it an operation because it is so simple. But, being that they will be cutting my 4 year old little boy, I'm a bit nervous. As I understand it, they insert the catheter into the jugular and align it very close to his heart. I'm glad the surgeon is calm about it, but that sure sounds dangerous and scary to me.
The surgeon is wonderful to work with, he has bent over backward to get us in this week to avoid another IV for William. I spoke with the anesthesiologist tonight as well and she is terrific too. There is a chance that she is in-network for our insurance, which would be such a huge blessing as we have met all deductibles and maximums and it would be covered 100% if she is.
William is a little anxious, but only because he doesn't know what to expect. He's mainly focusing on the "no more IVs" good news. When it is his turn, they will give him some "silly juice" to take the edge off before they take him from me to go to the OR. That will be the most difficult part for him. He will breathe in the anesthesia and be asleep in about 20 seconds, after which they will insert an IV for pain medication and any emergency drugs. Recovery time is about 30 minutes and then they will remove the IV and he will be returned to me to recover for another hour before we are sent home.
His first in-office infusion will be on Tuesday with a second dose on Wednesday. We'll get to try out the port then.
Thank you for your prayers.
William Update
We finally heard from the insurance company today to say that we have been approved for infusions in the doctor's office instead of admitting him to the hospital every time. This is such a relief in every way possible. The stress of going to the hospital so frequently, placing IVs and staying overnight is so overwhelming, but doing this at the doctor's office will make it more relaxed. We will still spend all day there for 2 consecutive days, but we won't be forced to stay overnight and each visit will only cost us our office copay instead of 20% of a $30-60,000 hospital bill. Most importantly to William, it will be IV-free.
We visited a pediatric surgeon this afternoon for a consultation about placing an access port so we won't have to fight his tiny veins each time and be concerned about which thumb he sucks and if it is wrapped up by too much tape. I assured him on the way to the doctor's office that we would not be doing anything painful today. He asked if putting in the port would hurt and I suggested that he ask the doctor that question. He also wanted to ask if he would be able to collect bugs for his bug collection. (It's a twisted route to get there, but he was concerned that having an object near his shoulder would prevent him from turning his head that way and looking down, for fear of bumping it....thus, he would not be able to look for bugs on the ground.) Dr Kadesky was sure to tell William that he would not feel them put the port in because he would be asleep and his bug collecting days will not be over. I asked if they would be placing an IV for the surgery and he said that they would do it after the "silly juice."
The surgery lasts about an hour, but can be shorter. The goal is to get him on the schedule for Friday morning at 6:30am (gulp!). He'll be able to go home by the afternoon. He is due for his next infusion on the 24th. The port will be usable next Tuesday and Wednesday for his first in-office infusion. If we can not get him on the schedule for Friday, it will wait until the week after Christmas and we'll set one last IV for the infusion next week. The surgeon assured us that he will get us in before the end of the year/deductible reset.
I did contact the pharmaceutical company today that offers subcutaneous IgG. This is something the doctor told us about last time we were in the hospital. It consists of us giving him weekly injections at home rather than spending days in the office or hospital. It sounds pretty good, but it does have its down-sides. One is William's "dissatisfaction" with needles. The other is the painful bump of fluid left under his skin for a day to dissipate. After discussing it with the pharmacist and nurse on staff at the company, I determined that it is not the right thing for us right now. It is successful for patients with immune deficiencies, but neurological conditions require much more IgG to treat them meaning more would have to be injected under his skin. It is the fat that absorbs the fluid, but William hardly has any fat on him at all right now. It would be a more painful and frustrating process for him that necessary, so we'll revisit the issue in a few years when circumstances have changed.
We sent in labwork to test for Lyme Disease. It will be a while before we get results, but we are hoping for something productive.
William showed the first signs of weakening today. He was very tired and more frustrated by his falls today. We'll hang in there through the weekend and be really ready for the infusion early next week.
We visited a pediatric surgeon this afternoon for a consultation about placing an access port so we won't have to fight his tiny veins each time and be concerned about which thumb he sucks and if it is wrapped up by too much tape. I assured him on the way to the doctor's office that we would not be doing anything painful today. He asked if putting in the port would hurt and I suggested that he ask the doctor that question. He also wanted to ask if he would be able to collect bugs for his bug collection. (It's a twisted route to get there, but he was concerned that having an object near his shoulder would prevent him from turning his head that way and looking down, for fear of bumping it....thus, he would not be able to look for bugs on the ground.) Dr Kadesky was sure to tell William that he would not feel them put the port in because he would be asleep and his bug collecting days will not be over. I asked if they would be placing an IV for the surgery and he said that they would do it after the "silly juice."
The surgery lasts about an hour, but can be shorter. The goal is to get him on the schedule for Friday morning at 6:30am (gulp!). He'll be able to go home by the afternoon. He is due for his next infusion on the 24th. The port will be usable next Tuesday and Wednesday for his first in-office infusion. If we can not get him on the schedule for Friday, it will wait until the week after Christmas and we'll set one last IV for the infusion next week. The surgeon assured us that he will get us in before the end of the year/deductible reset.
I did contact the pharmaceutical company today that offers subcutaneous IgG. This is something the doctor told us about last time we were in the hospital. It consists of us giving him weekly injections at home rather than spending days in the office or hospital. It sounds pretty good, but it does have its down-sides. One is William's "dissatisfaction" with needles. The other is the painful bump of fluid left under his skin for a day to dissipate. After discussing it with the pharmacist and nurse on staff at the company, I determined that it is not the right thing for us right now. It is successful for patients with immune deficiencies, but neurological conditions require much more IgG to treat them meaning more would have to be injected under his skin. It is the fat that absorbs the fluid, but William hardly has any fat on him at all right now. It would be a more painful and frustrating process for him that necessary, so we'll revisit the issue in a few years when circumstances have changed.
We sent in labwork to test for Lyme Disease. It will be a while before we get results, but we are hoping for something productive.
William showed the first signs of weakening today. He was very tired and more frustrated by his falls today. We'll hang in there through the weekend and be really ready for the infusion early next week.
Thursday, November 6, 2008
William's updated diagnosis
We visited our usual neurologist this morning. He observed the decrease in William's abilities and also commented that his hands are curled more than even the first visit we had. His reflexes are missing in his legs and now in his arms, which is new. Due to the unknown onset of this condition (sometimes it can be linked to a surgery, stomach virus, vaccinations, etc, but we have no indication of that in William) and the continuation of symptoms past 8 weeks, he has diagnosed William with the Chronic form of GBS, called Chronic Inflammatory Demyelinating Polyneuropathy. The condition is the same as Acute IDP/Guillain Barre, but does not resolve itself in the brief time that GBS patients experience. This does not mean that he can not spontaneously recover from the condition, but his condition could continue on for a very extended amount of time. Treatment for CIDP includes the IVIG treatment he has been receiving and possibly steroids. Other treatments can include immunosuppressants, but those are not even on the table at this point.
We know that the IVIG is effective in relieving William's symptoms and given the drastic side effects of Prednisone, we'd like to avoid that if possible. Of course, steroid doses can be administered at home and are far cheaper than hospital admittance for IV blood products (which run $30-$50K per treatment) and we will pursue them if necessary. The doctor really wrestled with whether to begin a steroid treatment today or whether to begin a course of regularly scheduled IVIG treatments. Before he continues treatments, he needs to do a nerve conductivity test. This is the test we've been fearing. This test involves electrode stickers placed strategically on his arms, legs and hands, through which they run electricity and measure the reaction times of his muscles to determine where and how the nerves and/or muscles are failing. In a person with healthy nerves, it feels like the shock you get in the winter when you're wearing wool and touch the door knob. For William, who is extra sensitive right now to all stimuli because of his nerve damage and because of his prior diagnosis of Sensory Processing Disorder (SPD makes his clothing tags feel like sandpaper on his skin and walking flat footed on the floor feels like walking on jagged rocks), this will be unbearable. On top of that, the doctor will have to use a higher setting to get a reaction from his nerves at all, since they are damaged. Which begs the question, "WHY exactly are we putting our 4 year old through this??" The doctor and I discussed that very thing at length. This test will not alter the treatments at this time, but now that we know we are dealing with a chronic problem, it is important that we have a benchmark test to assess any future downturns to determine the necessity for drastic treatments, like the immunosuppressants. By now you are thinking what I was when the doctor said it...if this test is the benchmark, we'll have to endure another one at some point to be able to compare. And now you are thinking, like I was, that this guy is just sadistic to put a young child through that not once, but twice (or more). I honestly feel like he would prefer not to perform this test on William and there is no guarantee that we will have to do another one, unless William continually worsens, but it will become an essential tool if we continue down this horrible path over the next months or years. The doctor has prescribed a sedative that should not interfere with the test results, but will make William relax for the test without actually making him unconscious. "Schnookered" as the doctor called it.
William seems to be following a 4 week cycle with the IVIG treatments and subsequent weakening. We will perform this test on Wednesday morning, allowing us to enjoy William's 4th birthday party at the fire station this weekend and also to see how his condition progresses without IVIG intervention every 4 weeks. We will be watching for signs of distress, breathing difficulties, changes in his voice, or his ability to hold up his head, all of which will send us immediately to the hospital for intervention with IVIG. Also, any further weakening even without distress will warrant hospital admittance after the test on Wednesday for IVIG, but if he remains stable through Wednesday morning, we can pursue a path of allowing his own body to balance itself without hospitalization. Regardless of potential intervention he will continue with physical therapy until this condition becomes a thing of the past. Continual exercise of his muscles is essential for preventing permanent paralyzation and weakness.
So, as it turns out, we're in this for the long haul and it won't be pleasant. In a condition which normally repairs itself in its own time frame, there are no easy answers and no rushing things. I'm confident that God will heal William at the appropriate time, perhaps when I've learned the lesson from this that I need. (So, let's get on it with it...hit me over the head with that lesson and let's get better!! ) :-) On second thought, maybe a lesson in God's timing is in order here.
In case you were worried, William is still the brilliant and sweet boy he's always been. He's frustrated by his lack of abilities now, especially when trying to keep up with his sister. But, you've never met a more cuddly boy and he's so forthcoming with expressing his love too.
Thank you for your prayers.
We know that the IVIG is effective in relieving William's symptoms and given the drastic side effects of Prednisone, we'd like to avoid that if possible. Of course, steroid doses can be administered at home and are far cheaper than hospital admittance for IV blood products (which run $30-$50K per treatment) and we will pursue them if necessary. The doctor really wrestled with whether to begin a steroid treatment today or whether to begin a course of regularly scheduled IVIG treatments. Before he continues treatments, he needs to do a nerve conductivity test. This is the test we've been fearing. This test involves electrode stickers placed strategically on his arms, legs and hands, through which they run electricity and measure the reaction times of his muscles to determine where and how the nerves and/or muscles are failing. In a person with healthy nerves, it feels like the shock you get in the winter when you're wearing wool and touch the door knob. For William, who is extra sensitive right now to all stimuli because of his nerve damage and because of his prior diagnosis of Sensory Processing Disorder (SPD makes his clothing tags feel like sandpaper on his skin and walking flat footed on the floor feels like walking on jagged rocks), this will be unbearable. On top of that, the doctor will have to use a higher setting to get a reaction from his nerves at all, since they are damaged. Which begs the question, "WHY exactly are we putting our 4 year old through this??" The doctor and I discussed that very thing at length. This test will not alter the treatments at this time, but now that we know we are dealing with a chronic problem, it is important that we have a benchmark test to assess any future downturns to determine the necessity for drastic treatments, like the immunosuppressants. By now you are thinking what I was when the doctor said it...if this test is the benchmark, we'll have to endure another one at some point to be able to compare. And now you are thinking, like I was, that this guy is just sadistic to put a young child through that not once, but twice (or more). I honestly feel like he would prefer not to perform this test on William and there is no guarantee that we will have to do another one, unless William continually worsens, but it will become an essential tool if we continue down this horrible path over the next months or years. The doctor has prescribed a sedative that should not interfere with the test results, but will make William relax for the test without actually making him unconscious. "Schnookered" as the doctor called it.
William seems to be following a 4 week cycle with the IVIG treatments and subsequent weakening. We will perform this test on Wednesday morning, allowing us to enjoy William's 4th birthday party at the fire station this weekend and also to see how his condition progresses without IVIG intervention every 4 weeks. We will be watching for signs of distress, breathing difficulties, changes in his voice, or his ability to hold up his head, all of which will send us immediately to the hospital for intervention with IVIG. Also, any further weakening even without distress will warrant hospital admittance after the test on Wednesday for IVIG, but if he remains stable through Wednesday morning, we can pursue a path of allowing his own body to balance itself without hospitalization. Regardless of potential intervention he will continue with physical therapy until this condition becomes a thing of the past. Continual exercise of his muscles is essential for preventing permanent paralyzation and weakness.
So, as it turns out, we're in this for the long haul and it won't be pleasant. In a condition which normally repairs itself in its own time frame, there are no easy answers and no rushing things. I'm confident that God will heal William at the appropriate time, perhaps when I've learned the lesson from this that I need. (So, let's get on it with it...hit me over the head with that lesson and let's get better!! ) :-) On second thought, maybe a lesson in God's timing is in order here.
In case you were worried, William is still the brilliant and sweet boy he's always been. He's frustrated by his lack of abilities now, especially when trying to keep up with his sister. But, you've never met a more cuddly boy and he's so forthcoming with expressing his love too.
Thank you for your prayers.
Wednesday, November 5, 2008
William is Weakening
I've observed a continued weakening in William over the last two
weeks. I've taken the "wait and see" approach to this point because
the neurologist warned us that the next test they perform will be
painful and long and because the last time I took him in, they
admitted him, but he appeared fine the next day. It was 1 month
since his initial admittance and treatment, and it is one month now as
well.
The physical therapist told me today that she feels he is getting
weaker as the days go on and that she is concerned. I knew it and saw
it too. I've called the neurologist's office but am waiting to hear
whether they can work us in for an appointment before December.
He's weak. He's struggling to dress himself again and struggles to
get up when he falls, which is frequent again. He is climbing the
stairs, but it is very slow and labored. He's in pain when I squeeze
or pick him up. I fear we are quickly approaching right back where we
started. He responds well to the IVIG treatment. The other option is
Plasmaphersis, also known as plasma exchange, where they remove blood,
extract his plasma and return the red blood cells, but one method is
not better than the other.
Whatever happens, I just hope he's able to attend his own birthday
party this weekend. Poor guy.
For those interested, some information on GBS
weeks. I've taken the "wait and see" approach to this point because
the neurologist warned us that the next test they perform will be
painful and long and because the last time I took him in, they
admitted him, but he appeared fine the next day. It was 1 month
since his initial admittance and treatment, and it is one month now as
well.
The physical therapist told me today that she feels he is getting
weaker as the days go on and that she is concerned. I knew it and saw
it too. I've called the neurologist's office but am waiting to hear
whether they can work us in for an appointment before December.
He's weak. He's struggling to dress himself again and struggles to
get up when he falls, which is frequent again. He is climbing the
stairs, but it is very slow and labored. He's in pain when I squeeze
or pick him up. I fear we are quickly approaching right back where we
started. He responds well to the IVIG treatment. The other option is
Plasmaphersis, also known as plasma exchange, where they remove blood,
extract his plasma and return the red blood cells, but one method is
not better than the other.
Whatever happens, I just hope he's able to attend his own birthday
party this weekend. Poor guy.
For those interested, some information on GBS
Tuesday, November 4, 2008
Election Day
I found this site while looking for information regarding National Housewives' Day (Nov 3rd). HaLife maintains a list of daily trivia, but there is nothing trivial about what our country does today.
Today is the big day, Election Day!! I think the only thing I can say today to make a difference is, "Please go vote!!"
According to HaLife, it is also, Use Your Common Sense Day. Let that apply when you go to vote today, too.
Today is the big day, Election Day!! I think the only thing I can say today to make a difference is, "Please go vote!!"
According to HaLife, it is also, Use Your Common Sense Day. Let that apply when you go to vote today, too.
Monday, November 3, 2008
National Housewives' Day
Today is National Housewives' Day! That'd be me!
I manage my household. That's my job, my occupation, if you will.
I must say that some days I do it well and other days I need a manager to manage me, but I’m proud that I’m a housewife! I'd love to cook breakfast at dawn with my apron on, have full meals emerge from the oven with beautiful garnishes promptly at 6 each evening and have floors you can eat off of. I don't wear cocktail dresses and heels to chase my kids and I've only vacuumed in pearls once, which was a little exhilarating, actually. I don't mind the stereotypical images...I kind of idealize them, but the truth of the matter is that being a house wife is very little like that (at least for me).
The funny thing about me being a housewife is that I’m really not that good at it. I hate to fold laundry. I very much dislike sweeping. I actually like vacuuming, but there is usually too much clutter around for me to push the machine through. I let toothpaste build up on our sinks and mirrors and I don’t make my kids make their beds everyday. Regardless, I’m truly honored to be able to stay home with my children and serve them and my husband. It would be dishonest if I said there weren't days that I would prefer to be somewhere else (usually browsing a craft or home store). But, I know that my time and energy are much better spent in the managing of our house and raising our children.
Mainly, in keeping a house, I work to make it a home. In raising our children, the goal is to turn out well-balanced, stable human beings with a love of others and a passion for Christ. In being a wife, my job is one of support, confidante, companion, lover and best friend.
So, today I want to apologize for my shortcomings and pledge a dedication to improving myself toward those goals. It's an important job and I'm honored to get to do it.
I congratulate all housewives out there for their dedicated work. May your sink be ever-sparkling and your dinners never burnt. :-)
(Edited to Add: Today is also Sandwich Day, so see if your housewife will make you one. November 3rd is also Let Someone Have the Last Word Day, so...)
I manage my household. That's my job, my occupation, if you will.
I must say that some days I do it well and other days I need a manager to manage me, but I’m proud that I’m a housewife! I'd love to cook breakfast at dawn with my apron on, have full meals emerge from the oven with beautiful garnishes promptly at 6 each evening and have floors you can eat off of. I don't wear cocktail dresses and heels to chase my kids and I've only vacuumed in pearls once, which was a little exhilarating, actually. I don't mind the stereotypical images...I kind of idealize them, but the truth of the matter is that being a house wife is very little like that (at least for me).
The funny thing about me being a housewife is that I’m really not that good at it. I hate to fold laundry. I very much dislike sweeping. I actually like vacuuming, but there is usually too much clutter around for me to push the machine through. I let toothpaste build up on our sinks and mirrors and I don’t make my kids make their beds everyday. Regardless, I’m truly honored to be able to stay home with my children and serve them and my husband. It would be dishonest if I said there weren't days that I would prefer to be somewhere else (usually browsing a craft or home store). But, I know that my time and energy are much better spent in the managing of our house and raising our children.
Mainly, in keeping a house, I work to make it a home. In raising our children, the goal is to turn out well-balanced, stable human beings with a love of others and a passion for Christ. In being a wife, my job is one of support, confidante, companion, lover and best friend.
So, today I want to apologize for my shortcomings and pledge a dedication to improving myself toward those goals. It's an important job and I'm honored to get to do it.
I congratulate all housewives out there for their dedicated work. May your sink be ever-sparkling and your dinners never burnt. :-)
(Edited to Add: Today is also Sandwich Day, so see if your housewife will make you one. November 3rd is also Let Someone Have the Last Word Day, so...)
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