Hey y'all...
I just have a few minutes, so i'll make it a quick one:
-Caden is eating really well now, mostly enjoying modified versions of our food
-He is also sleeping better; there have been a few 12 hour sleeps, but mostly 6-8 hour stretches with 1 or 2 awakenings per night
-his arm is responding well to the lymphatic drainage massage; it is softer and looks smaller overall. We also received the "pyjama top" compression garment, which we have not yet used successfully because it needs alterations
-I am looking into getting a jogging stroller (more for comfort/ease of use off-roading rather than for jogging) and now I have an even better reason-yesterday the brake on Caden's stroller decided not to work anymore...and now I am dealing with trying to get a replacement...yay for poor customer service!!
Let's end on a happy note, here is a cute video of Caden giggling at me making funny faces...
Monday, August 16, 2010
Monday, August 2, 2010
10 months
So Caden turned 10 months old last Thursday, and I can't believe how fast the time has gone by. It seems like over the past few weeks time has been moving in fast-forward, especially when I think of the things the little guy has been doing lately...
About 3 weeks ago I had just finished feeding Caden when I heard him crunching on something, so I immediately opened his mouth and to my surprise there was not just one, but 4 new teeth on the top! Since then they have become much more visible in particular when he's smiling and laughing-it's too cute :) Thankfully the grinding is few and far between...
He has also just caught on to the waving thing over the past week or two. It really is amazing to see how they learn things, he seems to know exactly when it's appropriate to wave hi or bye, and we'll even catch him waving out the window while in the car or in the mirror at himself :)
Although he isn't crawling yet, he can still somehow get from A to B though a combination of rolling, dragging and pulling, and I still find myself being surprised when he manages to get a hold of something on the other side of the room...guess I need to get those gates up and make sure everything is babyproofed!
Caden has become very chatty, he's making all sorts of noises (including screams) and he will mimic us when we make certain noises to him. He also seems to understand simple words or directions, like if we point at something and tell him to look, if we say mamma or dadda he will usually look at myself or Dave, he knows to look at the dog when we say "Rufus" and so on.
He has also become much more curious with other little kids and with toys-he really examines his toys and figures them out much more thoroughly than he has in the past. He can now figure out that there are doors and compartments to open, that there are hidden parts and various buttons to be pushed to activate music and so forth. I love the serious expression on his little face when he is into playing with his toys :)
Things are getting better on the eating and sleeping fronts as well (thank goodness). Three nights ago Caden slept for an astonishing 12 hours straight which is unheard of for him! However that doesn't mean I slept well-I still got up a couple of times to check on him out of habit. Since then he has gone back to his schedule of bedtime at 8 (or so) wake up at 11 or 12, and then again at 6 in the morning. I can't complain about this because the alternative was to be waking up every 2 hours...
Last week Caden was sick for a couple of days with a fever, projectile vomiting and diarrhea, so we went to the doctor to get checked out , and found out that he had again lost weight. This could have had to do with him being sick, but I had thought he was doing better at eating solids, so I was surprised. So now we have another appointment in 1.5 weeks to check again, and it is my goal to feed him as much as I can before then to try and fatten him up ;) I've finally figured out that he likes to eat modified grown-up food as opposed to baby food, so I've been experimenting with making baby versions of whatever we are eating...so far he seems to like the results, and he's not gagging too often which is a bonus!
Perhaps the most exiting development is that the Lymphatic Drainage Massage seems to be helping quite a bit. Over the last few days Caden's arm has been looking and feeling smaller than it has in months. I have been wrapping it with the compression bandage most days, which seems to help maintain the effects of the massage, although I will admit I haven't wrapped it in a couple of days because it does limit the movement of his arm and his ability to play. The massage therapist recently measured Caden for a custom night-time compression vest/pajama top which should be ready in a couple of weeks. The amazing thing about it is that the company that makes the garments has said they are giving us this first one free (normally it would cost somewhere around $1000) which is really cool-apparently they have a kids program where they get one garment free or discounted each year, I guess because the little ones grow out of them so quickly...whatever the reason I think it's fantastic and at least it gives us a chance to see if the night time compression works without spending a fortune!
In summary, Caden is as gorgeous and awesome as ever, and he is growing up way too fast!
Good night, time for bed :)
About 3 weeks ago I had just finished feeding Caden when I heard him crunching on something, so I immediately opened his mouth and to my surprise there was not just one, but 4 new teeth on the top! Since then they have become much more visible in particular when he's smiling and laughing-it's too cute :) Thankfully the grinding is few and far between...
He has also just caught on to the waving thing over the past week or two. It really is amazing to see how they learn things, he seems to know exactly when it's appropriate to wave hi or bye, and we'll even catch him waving out the window while in the car or in the mirror at himself :)
Although he isn't crawling yet, he can still somehow get from A to B though a combination of rolling, dragging and pulling, and I still find myself being surprised when he manages to get a hold of something on the other side of the room...guess I need to get those gates up and make sure everything is babyproofed!
Caden has become very chatty, he's making all sorts of noises (including screams) and he will mimic us when we make certain noises to him. He also seems to understand simple words or directions, like if we point at something and tell him to look, if we say mamma or dadda he will usually look at myself or Dave, he knows to look at the dog when we say "Rufus" and so on.
He has also become much more curious with other little kids and with toys-he really examines his toys and figures them out much more thoroughly than he has in the past. He can now figure out that there are doors and compartments to open, that there are hidden parts and various buttons to be pushed to activate music and so forth. I love the serious expression on his little face when he is into playing with his toys :)
Things are getting better on the eating and sleeping fronts as well (thank goodness). Three nights ago Caden slept for an astonishing 12 hours straight which is unheard of for him! However that doesn't mean I slept well-I still got up a couple of times to check on him out of habit. Since then he has gone back to his schedule of bedtime at 8 (or so) wake up at 11 or 12, and then again at 6 in the morning. I can't complain about this because the alternative was to be waking up every 2 hours...
Last week Caden was sick for a couple of days with a fever, projectile vomiting and diarrhea, so we went to the doctor to get checked out , and found out that he had again lost weight. This could have had to do with him being sick, but I had thought he was doing better at eating solids, so I was surprised. So now we have another appointment in 1.5 weeks to check again, and it is my goal to feed him as much as I can before then to try and fatten him up ;) I've finally figured out that he likes to eat modified grown-up food as opposed to baby food, so I've been experimenting with making baby versions of whatever we are eating...so far he seems to like the results, and he's not gagging too often which is a bonus!
Perhaps the most exiting development is that the Lymphatic Drainage Massage seems to be helping quite a bit. Over the last few days Caden's arm has been looking and feeling smaller than it has in months. I have been wrapping it with the compression bandage most days, which seems to help maintain the effects of the massage, although I will admit I haven't wrapped it in a couple of days because it does limit the movement of his arm and his ability to play. The massage therapist recently measured Caden for a custom night-time compression vest/pajama top which should be ready in a couple of weeks. The amazing thing about it is that the company that makes the garments has said they are giving us this first one free (normally it would cost somewhere around $1000) which is really cool-apparently they have a kids program where they get one garment free or discounted each year, I guess because the little ones grow out of them so quickly...whatever the reason I think it's fantastic and at least it gives us a chance to see if the night time compression works without spending a fortune!
In summary, Caden is as gorgeous and awesome as ever, and he is growing up way too fast!
Good night, time for bed :)
Saturday, July 10, 2010
Updates
Well, on Friday July 2nd we finally got in to see the specialist at the Vascular Anomalies Clinic at Sick Kids. I'm really happy to have him involved in Caden's care because he seems extremely knowledgeable, very nice, and truly empathetic towards Caden's condition, as well as our concerns as parents. He finally told us what we've pretty much known all along; that Caden does indeed have Klippel-Trenaunay Syndrome.
Towards the beginning of his explanations and history taking, this doctor did say something that hit me quite hard, he said "first of all, I don't want to give you any false hope-Caden's arm and chest will never look normal". Even though I felt I had long ago come to terms with this reality, hearing it out loud made my eyes sting with tears, and I had to fight hard to blink them away and concentrate on the rest of the conversation. Although I know we can never get to the point that Caden will look as though there was never any birthmark or swelling, I continue to believe that things can most definitely be done to help minimize future disfigurement, and I will forever be seeking out alternative treatments-more on this later.
So in summary, during this first appointment Dr. J discussed that after an initial work-up, most of the KTS patients are seen at the clinic about once a year-barring any complications. There is not much done in the way of medical or surgical treatments unless problems arise. He did say that at any point should we have concerns or wish to be referred to specific specialties for assessment he would have no problem with that. I asked his thoughts on alternative therapies such as the Manual Lymphatic Drainage massage, and he said that he's all for trying things that may work, as long as they aren't harmful, so to go ahead and try. I asked about lasering the port-wine stain, and he said that the dermatologist would be best to discuss that with, but there will be a lot to laser.
I think people get the wrong idea when I ask about lasering, like I only care about the aesthetic aspect. My real concern is what the port-wine stain can possibly turn into if not treated. Sometimes in adulthood, the mark can change from a basically flat reddish-purple, to much deeper purple raised and thickened skin that is almost puffy or "cobbled" in appearance. As you can imagine this would likely lead to further disfigurement and complications, so if lasering in childhood can help to lessen some of these effects, why not go for it? From all the literature I've read the consensus seems to be the earlier the laser treatments begin, the better the results.
Anyway, back to the appointment...I also asked about the possible use of a compression garment, because Caden's malformation involves the lymphatic vessels I figured the swelling is likely due to an accumulation of lymphatic fluid, therefore compression could help to move the fluid. Dr. J said that they don't usually offer or recommend these garments, unless it is in an older child whose lower limb is affected and is becoming heavy/causing problems with mobility etc. I was a bit disappointed because I feel like maybe a compression sleeve could help a little bit, and also protect Caden's arm at the same time, so what's the harm? This is something I'm not giving up on, and I think it requires further investigation...
So at the end of the appointment we were told that we would be called to come back in for another ultrasound of Caden's liver and other abdominal organs (even though we had an ultrasound of the liver done the doctor wants to do a more extensive one at Sick Kids). We were also given requisitions to go for more bloodwork, x-rays and medical photography before we left for the day. The photos were relatively painless and tear-free, but then came the bloodwork and finally the x-rays, by which time Caden had a meltdown-it didn't help that I had to hold him like he was hog-tied around some block on the table so they could get the necessary images.
Then it was back home just in time to make it to the appointment for the Lymphatic Drainage massage. The session went fairly well, the therapist (Kim) took some history and explained what MLD was about, then she proceeded to work on Caden a bit (by this time he had no naps and was getting cranky) and discussed the possibility that a compression sleeve may help, but that we could first try wrapping/bandaging the arm after the massage to see the effect it may have. I agreed to this and she bandaged him up, telling me to take it off before he went to bed and see if there was any improvement to the size of the arm-if there was it would be a good indication that compression may help.
That evening when I unwrapped the bandage, I was quite surprised to see not only that Caden's arm looked overall smaller, but that the skin and soft tissue felt very pliable-not tight or hard at all, to the point where I could feel the bone in his forearm (which is unusual). This only lasted a couple of hours though, before it was almost back to normal. It probably didn't help that he was rolling around in his sleep and laying on that side. However, this did give me some hope that perhaps regular massage and consistent compression can be of some help. Kim taught me some basics of the massage and how to wrap the arm so that I could continue doing it hopefully daily between visits. The first two times I did it Caden's arm looked a bit smaller, but his hand seemed extra puffy, and yesterday it didn't seem to help at all, so I think I'm doing something wrong-good thing we have another appointment on monday!
In other news Caden had his 9 month check-up at his GP, and everything is going well except for his weight. Since the end of April he has lost weight-that's right, he weighs less now than he did over 2 months ago :(
I suspect that this has to do with him not wanting to eat solids, so now I really have to force the issue. Thankfully he has started to eat most of the foods I've offered him in the past few days so hopefully he keeps it up-we have an appointment to re-check his weight in a month so we'll see...
Oh, and finally the GP had the results of the liver ultrasound, and essentially further follow-up is needed, the ultrasound report just acknowledged that there is some sort of lesion, but that a dedicated MRI should be done to assess it-great, not another MRI :( So I guess I'll be contacting Sick Kids again to figure that all out...
Must go to bed now...but not before posting a pic or three of the little man :)
Towards the beginning of his explanations and history taking, this doctor did say something that hit me quite hard, he said "first of all, I don't want to give you any false hope-Caden's arm and chest will never look normal". Even though I felt I had long ago come to terms with this reality, hearing it out loud made my eyes sting with tears, and I had to fight hard to blink them away and concentrate on the rest of the conversation. Although I know we can never get to the point that Caden will look as though there was never any birthmark or swelling, I continue to believe that things can most definitely be done to help minimize future disfigurement, and I will forever be seeking out alternative treatments-more on this later.
So in summary, during this first appointment Dr. J discussed that after an initial work-up, most of the KTS patients are seen at the clinic about once a year-barring any complications. There is not much done in the way of medical or surgical treatments unless problems arise. He did say that at any point should we have concerns or wish to be referred to specific specialties for assessment he would have no problem with that. I asked his thoughts on alternative therapies such as the Manual Lymphatic Drainage massage, and he said that he's all for trying things that may work, as long as they aren't harmful, so to go ahead and try. I asked about lasering the port-wine stain, and he said that the dermatologist would be best to discuss that with, but there will be a lot to laser.
I think people get the wrong idea when I ask about lasering, like I only care about the aesthetic aspect. My real concern is what the port-wine stain can possibly turn into if not treated. Sometimes in adulthood, the mark can change from a basically flat reddish-purple, to much deeper purple raised and thickened skin that is almost puffy or "cobbled" in appearance. As you can imagine this would likely lead to further disfigurement and complications, so if lasering in childhood can help to lessen some of these effects, why not go for it? From all the literature I've read the consensus seems to be the earlier the laser treatments begin, the better the results.
Anyway, back to the appointment...I also asked about the possible use of a compression garment, because Caden's malformation involves the lymphatic vessels I figured the swelling is likely due to an accumulation of lymphatic fluid, therefore compression could help to move the fluid. Dr. J said that they don't usually offer or recommend these garments, unless it is in an older child whose lower limb is affected and is becoming heavy/causing problems with mobility etc. I was a bit disappointed because I feel like maybe a compression sleeve could help a little bit, and also protect Caden's arm at the same time, so what's the harm? This is something I'm not giving up on, and I think it requires further investigation...
So at the end of the appointment we were told that we would be called to come back in for another ultrasound of Caden's liver and other abdominal organs (even though we had an ultrasound of the liver done the doctor wants to do a more extensive one at Sick Kids). We were also given requisitions to go for more bloodwork, x-rays and medical photography before we left for the day. The photos were relatively painless and tear-free, but then came the bloodwork and finally the x-rays, by which time Caden had a meltdown-it didn't help that I had to hold him like he was hog-tied around some block on the table so they could get the necessary images.
Then it was back home just in time to make it to the appointment for the Lymphatic Drainage massage. The session went fairly well, the therapist (Kim) took some history and explained what MLD was about, then she proceeded to work on Caden a bit (by this time he had no naps and was getting cranky) and discussed the possibility that a compression sleeve may help, but that we could first try wrapping/bandaging the arm after the massage to see the effect it may have. I agreed to this and she bandaged him up, telling me to take it off before he went to bed and see if there was any improvement to the size of the arm-if there was it would be a good indication that compression may help.
That evening when I unwrapped the bandage, I was quite surprised to see not only that Caden's arm looked overall smaller, but that the skin and soft tissue felt very pliable-not tight or hard at all, to the point where I could feel the bone in his forearm (which is unusual). This only lasted a couple of hours though, before it was almost back to normal. It probably didn't help that he was rolling around in his sleep and laying on that side. However, this did give me some hope that perhaps regular massage and consistent compression can be of some help. Kim taught me some basics of the massage and how to wrap the arm so that I could continue doing it hopefully daily between visits. The first two times I did it Caden's arm looked a bit smaller, but his hand seemed extra puffy, and yesterday it didn't seem to help at all, so I think I'm doing something wrong-good thing we have another appointment on monday!
In other news Caden had his 9 month check-up at his GP, and everything is going well except for his weight. Since the end of April he has lost weight-that's right, he weighs less now than he did over 2 months ago :(
I suspect that this has to do with him not wanting to eat solids, so now I really have to force the issue. Thankfully he has started to eat most of the foods I've offered him in the past few days so hopefully he keeps it up-we have an appointment to re-check his weight in a month so we'll see...
Oh, and finally the GP had the results of the liver ultrasound, and essentially further follow-up is needed, the ultrasound report just acknowledged that there is some sort of lesion, but that a dedicated MRI should be done to assess it-great, not another MRI :( So I guess I'll be contacting Sick Kids again to figure that all out...
Must go to bed now...but not before posting a pic or three of the little man :)
Wednesday, June 30, 2010
better late than never!
I know, I know. I'm a real slacker when it comes to updating this blog. It's just that I'm such a slow typer (i'm sure that's not a word) and so many things have happened in the past month that I get overwhelmed and then my procrastination goes into overdrive...
Soooo, as for the results of the MRI:
-First of all, Caden's brain is free of any malformations, which is awesome :)
-It looks as though the type of vascular malformation that Caden has mostly involves the small vessels; more specifically the capillaries and lymphatic vessels, as opposed to involving the larger veins and arteries. A doppler ultrasound is recommended as follow up to ensure that none of the larger vessels are involved.
-There is also some bone involvement which pretty much follows the pattern of his port-wine stain and swelling. That is to say that the bones in his right arm, shoulder blade, some of his ribs and vertebrae are somewhat "expanded". There's also a slight curve to his spine. There may be minor involvement of the bone in his left upper arm. Further x-rays will need to be done to determine the extent to which the bones are affected.
-The skin, soft tissues and muscles of his right arm and right upper torso are thickened-anyone who has seen him could tell you this without an MRI...
-There are a few enlarged lymph nodes in his right armpit (we have been able to feel a lump there since birth)
-There is a "non-specific" lesion seen on Caden's liver. This could possibly be another grouping/malformation of blood vessels, but an ultrasound will need to be done to see what it is. The annoying part is that the doctor who gave us the results didn't mention this, I only noticed it after we left when I read the MRI report...
-The report indicates that the findings may be consistent with Klippel-Trenaunay Syndrome...my guess is that the radiologist doesn't give a diagnosis, only reports the findings, therefore in order to get a diagnosis of KTS we just need the specialist to look at all of the imaging and say "yup, that's what it is"
A couple of days after getting the results, we had an appointment with the pediatrician, who had also received a copy. After fitting in all my questions, and discussing the results in detail (including the liver lesion) we left the office to go to the local hospital for bloodwork. Caden had seemed especially grumpy and pale looking for a couple of weeks prior, and because of his recent refusals to eat solid foods I suspected he may be anemic. His motto seems to be "all breastmilk-all the time" something that needs to change prior to starting daycare! The pediatrician also made a referral to have an ultrasound of the liver, and referrals to both physio and occupational therapy, which will hopefully minimize any movement/postural issues related to the KTS and also assess and address issues with feeding respectively.
Since then we have had the ultrasound, but no results yet...I'm hoping this means that there are no big issues, because it's been over 1.5 weeks and I'm assuming they would have sent the results to the doctor ASAP is there was anything significant. Also the bloodwork was normal so I guess there must be another reason for the grumpiness and pale skin ;)
In the meantime I've been investigating Manual Lymphatic Drainage, a technique performed by individuals with specialized training (usually RMT's or physiotherapists), and which can help to move some of the fluid and lessen swelling to the affected limb/body part. I found a woman locally who is an RMT and who is trained to perform MLD, and we have a consult this friday with her. In my online research, I came across a very interesting illustration about the way lymph drains from the body, here it is:
Soooo, as for the results of the MRI:
-First of all, Caden's brain is free of any malformations, which is awesome :)
-It looks as though the type of vascular malformation that Caden has mostly involves the small vessels; more specifically the capillaries and lymphatic vessels, as opposed to involving the larger veins and arteries. A doppler ultrasound is recommended as follow up to ensure that none of the larger vessels are involved.
-There is also some bone involvement which pretty much follows the pattern of his port-wine stain and swelling. That is to say that the bones in his right arm, shoulder blade, some of his ribs and vertebrae are somewhat "expanded". There's also a slight curve to his spine. There may be minor involvement of the bone in his left upper arm. Further x-rays will need to be done to determine the extent to which the bones are affected.
-The skin, soft tissues and muscles of his right arm and right upper torso are thickened-anyone who has seen him could tell you this without an MRI...
-There are a few enlarged lymph nodes in his right armpit (we have been able to feel a lump there since birth)
-There is a "non-specific" lesion seen on Caden's liver. This could possibly be another grouping/malformation of blood vessels, but an ultrasound will need to be done to see what it is. The annoying part is that the doctor who gave us the results didn't mention this, I only noticed it after we left when I read the MRI report...
-The report indicates that the findings may be consistent with Klippel-Trenaunay Syndrome...my guess is that the radiologist doesn't give a diagnosis, only reports the findings, therefore in order to get a diagnosis of KTS we just need the specialist to look at all of the imaging and say "yup, that's what it is"
A couple of days after getting the results, we had an appointment with the pediatrician, who had also received a copy. After fitting in all my questions, and discussing the results in detail (including the liver lesion) we left the office to go to the local hospital for bloodwork. Caden had seemed especially grumpy and pale looking for a couple of weeks prior, and because of his recent refusals to eat solid foods I suspected he may be anemic. His motto seems to be "all breastmilk-all the time" something that needs to change prior to starting daycare! The pediatrician also made a referral to have an ultrasound of the liver, and referrals to both physio and occupational therapy, which will hopefully minimize any movement/postural issues related to the KTS and also assess and address issues with feeding respectively.
Since then we have had the ultrasound, but no results yet...I'm hoping this means that there are no big issues, because it's been over 1.5 weeks and I'm assuming they would have sent the results to the doctor ASAP is there was anything significant. Also the bloodwork was normal so I guess there must be another reason for the grumpiness and pale skin ;)
In the meantime I've been investigating Manual Lymphatic Drainage, a technique performed by individuals with specialized training (usually RMT's or physiotherapists), and which can help to move some of the fluid and lessen swelling to the affected limb/body part. I found a woman locally who is an RMT and who is trained to perform MLD, and we have a consult this friday with her. In my online research, I came across a very interesting illustration about the way lymph drains from the body, here it is:
I was pretty shocked when I saw this image because the right drainage area is almost an exact diagram of the pattern of Caden's swelling/port-wine stain. So it seems that the malformation certainly involves this area of the lymphatic system.
A couple of weeks ago I went up to a friend's cottage near Parry Sound. It was quite the event because I also brought Caden, and Dave had never been away from him overnight before (never mind 2 nights!). The cottage was awesome and it was great to hang out with the girls again!
However, the first morning I woke up (well, I never really slept I guess) and noticed that Caden's right arm looked quite a bit larger than usual, slightly purple and the skin was very tight and shiny. The tightness and colour resolved after half hour or so, but the arm still appeared larger than I'd ever seen it, so I chalked it up to him lying on it for most of the night. Since then, his arm has fluctuated a bit in size and varied in colour, but it has yet to go back to the size it was prior to this "jump" in the swelling. I would estimated that it appears about 20% bigger than it was just a few weeks ago.
About a week ago I contacted the nurse from the derm clinic at Sick Kids to discuss that I was concerned about this overall increase in size. She was probably not the most appropriate person to call, but currently there is no other option because we are still waiting to be seen by the vascular anomalies clinic. The end result was that they booked us an appointment to be reassessed on July 7.
Then, last Friday, Dave, Caden and I went to the Eaton Center for a birthday shopping trip (my birthday was Saturday). Probably not too smart given the G20 protests, but we didn't encounter any of those problems. What we did encounter was Caden's right arm swelling larger than we'd ever seen, with tight, shiny, hard skin that was somewhat molded to the shape of the stroller wall he was leaning against! Needless to say, we rushed over to Sick Kids in hopes of being fit in to the derm clinic, only to discover it was closed. Our next best option was the Emerg, so over we went. After being checked in pretty quickly we settled into a nice private room with a tv, and proceded to spend the next 7 hours there. Of course after the first hour his arm looked almost back to it's new "normal" size, but by that point we were invested and wanted answers. By the time we left Caden had received an ultrasound of his arm, confirming that there were no clots or bleeds. We got to see that the main blood vessels (veins and arteries) of that arm are normal from his armpit down to his hand-which in itself was worth the 7 hours. The final stretch was waiting 2 hours for bloodwork to come back, and it was normal. The ER doctors did consult with Caden's main dermatologist who wanted to see him in the clinic on monday.
And that brings us to this week. Monday we went in to see the dermatologist, and after painfully explaining Caden's condition to her resident who didn't speak english, we finally got to see her. She totally agreed that the swelling shouldn't just be left to go on and on, and that we should be seen soon by the vascular people, as opposed to the projected couple of month wait. She must have either thought the swelling was really serious or she pulled some strings because we now have an appointment for this friday with the vascular clinic-the people who will likely treat/follow Caden's condition from here on out. I really need to make a list of questions because I know I will come away from it thinking "oh I should have asked that!".
In non-medical news, Caden is as cute as ever, and just turned 9 months old yesterday. He's having some eating and sleeping issues, but he's still awesome so I can't complain :)
Dave also had his first father's day, and it wouldn't be complete without the father son pic from that day:
A couple of weeks ago I went up to a friend's cottage near Parry Sound. It was quite the event because I also brought Caden, and Dave had never been away from him overnight before (never mind 2 nights!). The cottage was awesome and it was great to hang out with the girls again!
However, the first morning I woke up (well, I never really slept I guess) and noticed that Caden's right arm looked quite a bit larger than usual, slightly purple and the skin was very tight and shiny. The tightness and colour resolved after half hour or so, but the arm still appeared larger than I'd ever seen it, so I chalked it up to him lying on it for most of the night. Since then, his arm has fluctuated a bit in size and varied in colour, but it has yet to go back to the size it was prior to this "jump" in the swelling. I would estimated that it appears about 20% bigger than it was just a few weeks ago.
About a week ago I contacted the nurse from the derm clinic at Sick Kids to discuss that I was concerned about this overall increase in size. She was probably not the most appropriate person to call, but currently there is no other option because we are still waiting to be seen by the vascular anomalies clinic. The end result was that they booked us an appointment to be reassessed on July 7.
Then, last Friday, Dave, Caden and I went to the Eaton Center for a birthday shopping trip (my birthday was Saturday). Probably not too smart given the G20 protests, but we didn't encounter any of those problems. What we did encounter was Caden's right arm swelling larger than we'd ever seen, with tight, shiny, hard skin that was somewhat molded to the shape of the stroller wall he was leaning against! Needless to say, we rushed over to Sick Kids in hopes of being fit in to the derm clinic, only to discover it was closed. Our next best option was the Emerg, so over we went. After being checked in pretty quickly we settled into a nice private room with a tv, and proceded to spend the next 7 hours there. Of course after the first hour his arm looked almost back to it's new "normal" size, but by that point we were invested and wanted answers. By the time we left Caden had received an ultrasound of his arm, confirming that there were no clots or bleeds. We got to see that the main blood vessels (veins and arteries) of that arm are normal from his armpit down to his hand-which in itself was worth the 7 hours. The final stretch was waiting 2 hours for bloodwork to come back, and it was normal. The ER doctors did consult with Caden's main dermatologist who wanted to see him in the clinic on monday.
And that brings us to this week. Monday we went in to see the dermatologist, and after painfully explaining Caden's condition to her resident who didn't speak english, we finally got to see her. She totally agreed that the swelling shouldn't just be left to go on and on, and that we should be seen soon by the vascular people, as opposed to the projected couple of month wait. She must have either thought the swelling was really serious or she pulled some strings because we now have an appointment for this friday with the vascular clinic-the people who will likely treat/follow Caden's condition from here on out. I really need to make a list of questions because I know I will come away from it thinking "oh I should have asked that!".
In non-medical news, Caden is as cute as ever, and just turned 9 months old yesterday. He's having some eating and sleeping issues, but he's still awesome so I can't complain :)
Dave also had his first father's day, and it wouldn't be complete without the father son pic from that day:
Thursday, May 20, 2010
hurry up and wait
Well I've been slacking a bit on the updates, but there's a few things to vent about since Caden's MRI last friday at Sick Kids. We were supposed to arrive by 8am for the procedure to begin at 9. We ended up getting there for 7, checked in, then had to wait around for a bit trying to relax with a coffee. We were then taken in around 8 or so to have Caden's vital signs done and go over some of the information with the nurse. Closer to 9 we got him changed into a gown and were finally called in to the room with the anesthetist, who again went over some questions and gave us the opportunity to ask questions. It was at this point they mentioned that the MRI was actually booked for 3 hours, not the 1.5-2 hours we were originally told. I also was not expecting them to swaddle Caden and put the gas mask on him while we were still there. It was heartbreaking because he was crying and struggling and I had to try and soothe him by talking to him right in his face until he went to sleep. Afterwards I said to Dave that I felt a bit woozy because I could smell the gas while I was that close to the mask.
From that point it was time to wait for 3 hours, and by the end of that time we were so anxious to see Caden, we rushed into the recovery room as soon as they called us. It was upsetting to see our little guy completely out of it. He was awake, but all limp and just blankly staring at the nurse with his mouth open. Luckily, he came around pretty quickly, and except for seeming hungry, tired and a bit weak, he was almost back to normal by the time we got home.
About an hour or so after we got home, I noticed his face was getting flushed red and hot, but he didn't have a fever at all. I called the MRI nurse to ask about possible reactions, and she consulted with the other staff who agreed that the general anesthetic would be out of his system already, but the contrast dye does last a bit longer, so any reaction would likely be due to that. I asked if I could give him benadryl, they said it was a good idea, but to take him to emerg if the reaction didn't improve. After giving the medication, the flushing seemed to go away, and then Caden was off to sleep for a bit.
After he woke up again, and for the rest of the evening, he kept doing this strange spastic head shaking-as though he was shaking his head "no" quickly, it would last for 5 or so seconds each time. At first glance it looked almost seizure-like, but we could stop him from doing it by gently touching his face, and his eyes weren't rolling or unfocused, so initially I wasn't too worried. But then of course I went online and started looking up side effects of the contrast dye. Dave was also getting concerned that he kept doing it, and I was starting to think that I would be uncomfortable putting him to bed and going to sleep myself if something was wrong. After a quick call to Sick Kids and being unable to get in touch with anyone in the MRI department, we decided to go to McMaster children's emerg, rather than our local hospital that deals mostly with adults.
Bad idea. We had to wait from about 11:30 until after 3 in the morning, only to be seen by an incompetent doctor who basically just reiterated what I was saying, and then prescribed Caden ativan. Since I didn't trust him I asked to have a written prescription rather than him be given the meds there, just so I could check with the pharmacist. We may as well have stayed home for all the help we got there. On the way home we stopped at shoppers pharmacy and I picked up the one pill that was prescribed after consulting the pharmacist to ensure it was safe. When we got home I ended up giving Caden only half a dose because he was so tired and wasn't shaking his head much anymore.
On Saturday there were a few incidents of the head shake, but not nearly as often as friday, and then fewer again on Sunday. I haven't seen any today, so I'm hoping it was just a transient thing, possibly related to the MRI contrast, and maybe compounded by the stress and exhaustion of going through the procedure.
As it stands, we now have to wait 3 weeks for the results of the test, however while Caden was in recovery, the nurse had mentioned that there weren't any urgent findings that would warrant immediate consultation during the MRI. I am assuming that means there weren't any issues with his brain or other major organs, and that we are dealing with vascular malformations mainly in the arm, but we will find out for sure on June 7. Until then it's good to see the little man back to his normal self :)
From that point it was time to wait for 3 hours, and by the end of that time we were so anxious to see Caden, we rushed into the recovery room as soon as they called us. It was upsetting to see our little guy completely out of it. He was awake, but all limp and just blankly staring at the nurse with his mouth open. Luckily, he came around pretty quickly, and except for seeming hungry, tired and a bit weak, he was almost back to normal by the time we got home.
About an hour or so after we got home, I noticed his face was getting flushed red and hot, but he didn't have a fever at all. I called the MRI nurse to ask about possible reactions, and she consulted with the other staff who agreed that the general anesthetic would be out of his system already, but the contrast dye does last a bit longer, so any reaction would likely be due to that. I asked if I could give him benadryl, they said it was a good idea, but to take him to emerg if the reaction didn't improve. After giving the medication, the flushing seemed to go away, and then Caden was off to sleep for a bit.
After he woke up again, and for the rest of the evening, he kept doing this strange spastic head shaking-as though he was shaking his head "no" quickly, it would last for 5 or so seconds each time. At first glance it looked almost seizure-like, but we could stop him from doing it by gently touching his face, and his eyes weren't rolling or unfocused, so initially I wasn't too worried. But then of course I went online and started looking up side effects of the contrast dye. Dave was also getting concerned that he kept doing it, and I was starting to think that I would be uncomfortable putting him to bed and going to sleep myself if something was wrong. After a quick call to Sick Kids and being unable to get in touch with anyone in the MRI department, we decided to go to McMaster children's emerg, rather than our local hospital that deals mostly with adults.
Bad idea. We had to wait from about 11:30 until after 3 in the morning, only to be seen by an incompetent doctor who basically just reiterated what I was saying, and then prescribed Caden ativan. Since I didn't trust him I asked to have a written prescription rather than him be given the meds there, just so I could check with the pharmacist. We may as well have stayed home for all the help we got there. On the way home we stopped at shoppers pharmacy and I picked up the one pill that was prescribed after consulting the pharmacist to ensure it was safe. When we got home I ended up giving Caden only half a dose because he was so tired and wasn't shaking his head much anymore.
On Saturday there were a few incidents of the head shake, but not nearly as often as friday, and then fewer again on Sunday. I haven't seen any today, so I'm hoping it was just a transient thing, possibly related to the MRI contrast, and maybe compounded by the stress and exhaustion of going through the procedure.
As it stands, we now have to wait 3 weeks for the results of the test, however while Caden was in recovery, the nurse had mentioned that there weren't any urgent findings that would warrant immediate consultation during the MRI. I am assuming that means there weren't any issues with his brain or other major organs, and that we are dealing with vascular malformations mainly in the arm, but we will find out for sure on June 7. Until then it's good to see the little man back to his normal self :)
Thursday, May 13, 2010
MRI
Well it's finally come-Caden will be undergoing an MRI tomorrow at Sick Kids. As I've mentioned before, the procedure is to determine the extent of the vascular malformation that has caused his extensive port-wine stains (red birthmark) and the swelling/enlargement of his right arm and shoulder. They think they know that these symptoms are all part of a syndrome, potentially "Klippel Trenaunay Syndrome" or KTS, but the MRI needs to be done to confirm a diagnosis. This imaging will also help the doctors to decide what course of treatment would be appropriate, as it will pinpoint the exact vessels that are affected. For the MRI, Caden will be given a general anesthetic and will also be having a contrast dye to give clearer pictures of the blood vessels. The whole thing is expected to last about 2 hours-during which time Dave and I will likely be nervous wrecks as we are not allowed to accompany him into the procedure area!
We won't be able to know the results for 3 weeks, so for now my nervousness is only related to the procedure-I'll deal with the results later. Whatever the outcomes, what we do know is that we have a very happy and charming little guy (wait-make that "big" guy ;) who is completely oblivious to any physical concerns, and who we love with all our hearts...
Love you Bubba :)
We won't be able to know the results for 3 weeks, so for now my nervousness is only related to the procedure-I'll deal with the results later. Whatever the outcomes, what we do know is that we have a very happy and charming little guy (wait-make that "big" guy ;) who is completely oblivious to any physical concerns, and who we love with all our hearts...
Love you Bubba :)
Saturday, May 1, 2010
7 months
Well, this past thursday Caden turned 7 months old... it's crazy! Where has the time gone? He wasn't as excited for this milestone as we were, due to the fact that he was sick for the past week. On tuesday night he seemed a bit cranky and unusually tired, and then he threw-up on me before he went to bed. He woke up at about 2am with a fever, and went back to sleep around 4 after the tylenol had taken effect. I brought him in to the doctor the next day because he wasn't his usual self-he was sleepy and upset on and off. The doctor suspected a minor chest or sinus infection, but prescribed antibiotics anyway because his fever kept coming back when the tylenol would wear off. Let me tell you, the antibiotics have reeked havoc on his gut, he's basically peeing out his bum, and having explosions every hour or so, the diapers are unable to contain the watery consistency! The good news is today and yesterday he was fever free, and somewhat back to his old self smiling and laughing :)
One positive side effect from Caden being sick was that he actually slept for 7+ hours the other night! Hopefully this becomes a trend and isn't just a fluke. Also, it's good that he is getting the sickness out of the way now-hopefully this means he won't be sick in 2 weeks for his MRI, because it would be cancelled.
About 2 weeks ago we went to Sick Kids for an appointment in both Physio and dermatology. Caden has had a small rash on his right hand (kind of like eczema) and it seemed to be spreading. They gave us a cream for it and said it was unrelated to his birth mark, which was a relief. At the physio appointment they assessed Caden and gave us some good exercises to do with him in regards to rollong over and learning to sit on his own. They said that he is only slightly delayed in the sitting, but that he should be getting the hang of it very soon-he's already showing signs of starting to do it.
Other than that stuff, we're just trying to go to the usual groups and get out with the other moms and babes. Here's some recent photos of the little sicky :)
One positive side effect from Caden being sick was that he actually slept for 7+ hours the other night! Hopefully this becomes a trend and isn't just a fluke. Also, it's good that he is getting the sickness out of the way now-hopefully this means he won't be sick in 2 weeks for his MRI, because it would be cancelled.
About 2 weeks ago we went to Sick Kids for an appointment in both Physio and dermatology. Caden has had a small rash on his right hand (kind of like eczema) and it seemed to be spreading. They gave us a cream for it and said it was unrelated to his birth mark, which was a relief. At the physio appointment they assessed Caden and gave us some good exercises to do with him in regards to rollong over and learning to sit on his own. They said that he is only slightly delayed in the sitting, but that he should be getting the hang of it very soon-he's already showing signs of starting to do it.
Other than that stuff, we're just trying to go to the usual groups and get out with the other moms and babes. Here's some recent photos of the little sicky :)
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