I've been sitting here for 5 mins with what I guess could be called writers block. I'm still in somewhat of a crummy head space these days but it is made a bit better by having family close by. My fabulous In-Laws (no sarcasm I swear!!), arrived on Saturday after driving in from North Vancouver. It was so wonderful to see Braeden's smiles for both Grandma and Pappa. Jean hasn't seen him since Christmas when he was so horribly swollen still from the Sepsis and had never seen him with his eyes open (aside from photos). A definite change of baby for her to see!!
We are at 25 weeks today and Mr.B weighed in at 5.75kgs. He is not gaining weight very quickly so they have upped his feeds today with the hope of fattening him up a bit before surgery Friday. How is it we've already arrived at May??
Friday...it is a day on the calendar that is looming over my head. I will be relieved to have it behind us but not at all looking forward to the pain Braeden will have to endure in the days/weeks after. We are scheduled for an abdominal ultrasound tomorrow and a follow-up ECG to see that everything is tickety boo. We have a busy week with dentist appointments and the start of soccer with Torin and Rylan but I just want Friday to be here (careful what I ask for) so we can get the day behind us.
I am so relieved that Wade and Jean are here so that I can be at the hospital 24/7 if I so choose, that certainly helps my stress level. Not that sleeping in the ICU fishbowl or using the communal family bathroom is appealing but at least I have the option if I so choose. Having them here also releases stress in the form of laughter (often of course at someone else's expense), Mike often just shakes his head when the four of us are in a room together.
Braeden had a great workout with his therapy assistant Christa today, she is so fantastic with him. It is like he tries to impress her, he is such a flirt with her! She held him in a sitting position and I held a toy music box in front of him and he actually made a reaching motion! So exciting to see! It might seem small to some but to have him do something "baby-ish" is exciting no matter how small! He also managed to hold his head up (albeit wobbly) the whole time too which goes to show his strength is improving.
There are many things to be thankful for:
1) 25 weeks, enough said
2) Loving and wonderful family close by
3) Normalcy in swimming, soccer and happy boys
4) Loving gazes and sweet baby smiles from Mr.B on a daily basis now...that alone is enough
Monday, 30 April 2012
Tuesday, 24 April 2012
The Long and Winding Road
I know it's been too long since I've updated when my phone starts ringing! It's been a rough week, not for B but for me. I've been struggling more and more with the impending surgery and have been dealing with the backlash of that. I am totally at peace about doing the surgery (although it freaks me out), I am completely confident in Dr.Brindle, and I am feeling like he (Braeden) is certainly strong enough to handle it. What part of the issue is, is that Braeden is turning more and more expressive and is overall a pretty happy kid so to have to see him limp and in pain again just eats me up.
It is like comparing the surgery to say having a child with a tumour on their kidney and they are having surgery to remove said tumour (I'm hopefully not offending anyone with this analogy). At the end of the surgery you would hope to have a positive result of no more tumour right and hopefully build a road of recovery? One of the things that gets me is that after his surgery we still aren't really any closer to figuring out 'Braeden'. The surgery(ies) are one(s) of importance without a doubt, we certainly don't want to be in an urgent situation. It just not a 'solution', it doesn't make him 'better'. That seems to be some of what I am dealing with, is that we don't know how to make Braeden 'better'. Don't get me wrong, I like him as he is quirks and all but he can't come home and build a life with all of us as he is currently.
I've worn my 'Counsellor' hat enough times to know that I am certainly in the "Anger" portion of the Kubler-Ross' Grief Cycle. (As Mike and the boys would most likely agree!) I do have a tendency to go back and forth between Anger and Depression with only very brief stop overs in Bargaining. Some of you are probably saying "How or why would you be grieving when you have your child here?" I guess the easiest way to describe it would be the loss or grieving for the loss of 'normalicy' of having a new baby and the steps and stages that go with that. I am grieving that Braeden is and will be my last pregnancy/birth (please don't get me wrong, I do NOT want another one) and I didn't get to fully experience it in a positive and affirmative way. Sigh, unfortunately Counsellors don't make the best patients but I do have the awareness of what I am experiencing.
I have tried very hard to maintain positivity throughout this process but I do have days (weeks) where it is just more difficult than others. Or times where I just sit and cry in the parking garage after visiting my sweet boy. I know that I can find positivity in the smallest of things with Braeden and I do, it is just that I am exhausted. The lack of sleep is one thing but I've also done a pretty good job of repressing alot of my grief and that is exhausting as well. People told me often in the beginning that they were concerned for me that I wasn't crying but I couldn't cry then, I was scared that if I started I wouldn't stop. People deal with trauma in life in many different ways but I chose to ride this part of our lives out with affirmations, hope and the strength in knowing myself and my children.
Braeden has brought us more joy and bliss than we could have hoped for but with his arrival we've also experienced stress like no other. This too shall pass, I just keep telling myself that I need to get through this next round of surgery(ies). It certainly helps knowing that my favourite in-laws are arriving in less than a week! I do have many of you keeping a close eye on me and if I could put into words what is is I need I know you would be there to offer it. I will just keep on keeping on and putting one foot in front of the other while taking the time to have a few tears once in awhile.
Perhaps it is time to revisit my J-O-Y!
It is like comparing the surgery to say having a child with a tumour on their kidney and they are having surgery to remove said tumour (I'm hopefully not offending anyone with this analogy). At the end of the surgery you would hope to have a positive result of no more tumour right and hopefully build a road of recovery? One of the things that gets me is that after his surgery we still aren't really any closer to figuring out 'Braeden'. The surgery(ies) are one(s) of importance without a doubt, we certainly don't want to be in an urgent situation. It just not a 'solution', it doesn't make him 'better'. That seems to be some of what I am dealing with, is that we don't know how to make Braeden 'better'. Don't get me wrong, I like him as he is quirks and all but he can't come home and build a life with all of us as he is currently.
I've worn my 'Counsellor' hat enough times to know that I am certainly in the "Anger" portion of the Kubler-Ross' Grief Cycle. (As Mike and the boys would most likely agree!) I do have a tendency to go back and forth between Anger and Depression with only very brief stop overs in Bargaining. Some of you are probably saying "How or why would you be grieving when you have your child here?" I guess the easiest way to describe it would be the loss or grieving for the loss of 'normalicy' of having a new baby and the steps and stages that go with that. I am grieving that Braeden is and will be my last pregnancy/birth (please don't get me wrong, I do NOT want another one) and I didn't get to fully experience it in a positive and affirmative way. Sigh, unfortunately Counsellors don't make the best patients but I do have the awareness of what I am experiencing.
I have tried very hard to maintain positivity throughout this process but I do have days (weeks) where it is just more difficult than others. Or times where I just sit and cry in the parking garage after visiting my sweet boy. I know that I can find positivity in the smallest of things with Braeden and I do, it is just that I am exhausted. The lack of sleep is one thing but I've also done a pretty good job of repressing alot of my grief and that is exhausting as well. People told me often in the beginning that they were concerned for me that I wasn't crying but I couldn't cry then, I was scared that if I started I wouldn't stop. People deal with trauma in life in many different ways but I chose to ride this part of our lives out with affirmations, hope and the strength in knowing myself and my children.
Braeden has brought us more joy and bliss than we could have hoped for but with his arrival we've also experienced stress like no other. This too shall pass, I just keep telling myself that I need to get through this next round of surgery(ies). It certainly helps knowing that my favourite in-laws are arriving in less than a week! I do have many of you keeping a close eye on me and if I could put into words what is is I need I know you would be there to offer it. I will just keep on keeping on and putting one foot in front of the other while taking the time to have a few tears once in awhile.
Perhaps it is time to revisit my J-O-Y!
Tuesday, 17 April 2012
Insomnia
I seem to have hit a 'fragile' period, I'm hoping it is just hormones and/or extreme exhaustion. I'm not feeling depressed per se but am certainly feeling blue a bit more than usual. What is getting me is this persistent insomnia! I've tried melatonin, warm milk, breathing, stretching, ativan, etc. but to no avail. At first (this is going back months now) I would fall asleep on a dime, I just couldn't stay asleep. Now I can't seem to shut down at all, even when I do sleep I have the most bizarre dreams!
I know that I am feeling the strain of having B's surgery(ies) approaching and I was trying to explain to Michael that while I know they are necessary, there is nothing that will miraculously bring him home. We have all of these procedures, which he needs, but in the end we still have all these problems it seems.
Mr.B has his Nephrology scan tomorrow to see if he is in fact having reflux and I've got the wonderful picture in my head of the last time we had a procedure in Radiology with him strapped to a board that resulted in his Code Blue. I told the Nephrologist, as soon as he suggested the test, that I would not like a resident to do the procedure. He probably thinks I'm a bit of a whack-a-doodle but I just think Braeden is too fragile to be a 'learning' experiment. That sounds a bit harsh I suppose!
I guess what it boils down to is that we are more than five months into this and are no closer to any answers. We just keep adding to the list that is Braeden. I know I joke about him having 'Braeden Syndrome' but really it seems that way some days, that we are all alone in this. Not alone as in no support, (of that we have lots and are eternally grateful!), but alone medically. The hospital is wonderful, the Dr's and the Nurses fantastic but there is only one Braeden, only one. Go down the list, check one off and find three more to add...
The latest issue we are facing is he seems to not be digesting (possibly not absorbing) fat. His stools have been bizarre for a week now and what it seems to be is that they are very 'fatty'. They are doing a series of tests to look at liver function but his NP assured me he shows no other signs of liver issues....oh Braeden, my sweet boy how you stress your Mommy! He has also dropped 1/2 pound in the past week but I am assuming (hoping) it was due to the Klebseilla and being sick.
I guess this is just the road that you go down when you have a child with a rare genetic disorder that is yet to be diagnosed. Have you ever tried to research genetic disorders? There are thousands, thousands! I need to find a website that I can just enter in all of his anomalies and it kicks out a diagnosis...hmm, guess I should be careful of what I ask for, sometimes that idea of a diagnosis seems even scarier!
Back to bed I go with the visions of sheep jumping or sugar plums or something in my head that isn't medically related.
Thanks for listening, guess there are days when the world seems a bit heavier than others.
I know that I am feeling the strain of having B's surgery(ies) approaching and I was trying to explain to Michael that while I know they are necessary, there is nothing that will miraculously bring him home. We have all of these procedures, which he needs, but in the end we still have all these problems it seems.
Mr.B has his Nephrology scan tomorrow to see if he is in fact having reflux and I've got the wonderful picture in my head of the last time we had a procedure in Radiology with him strapped to a board that resulted in his Code Blue. I told the Nephrologist, as soon as he suggested the test, that I would not like a resident to do the procedure. He probably thinks I'm a bit of a whack-a-doodle but I just think Braeden is too fragile to be a 'learning' experiment. That sounds a bit harsh I suppose!
I guess what it boils down to is that we are more than five months into this and are no closer to any answers. We just keep adding to the list that is Braeden. I know I joke about him having 'Braeden Syndrome' but really it seems that way some days, that we are all alone in this. Not alone as in no support, (of that we have lots and are eternally grateful!), but alone medically. The hospital is wonderful, the Dr's and the Nurses fantastic but there is only one Braeden, only one. Go down the list, check one off and find three more to add...
The latest issue we are facing is he seems to not be digesting (possibly not absorbing) fat. His stools have been bizarre for a week now and what it seems to be is that they are very 'fatty'. They are doing a series of tests to look at liver function but his NP assured me he shows no other signs of liver issues....oh Braeden, my sweet boy how you stress your Mommy! He has also dropped 1/2 pound in the past week but I am assuming (hoping) it was due to the Klebseilla and being sick.
I guess this is just the road that you go down when you have a child with a rare genetic disorder that is yet to be diagnosed. Have you ever tried to research genetic disorders? There are thousands, thousands! I need to find a website that I can just enter in all of his anomalies and it kicks out a diagnosis...hmm, guess I should be careful of what I ask for, sometimes that idea of a diagnosis seems even scarier!
Back to bed I go with the visions of sheep jumping or sugar plums or something in my head that isn't medically related.
Thanks for listening, guess there are days when the world seems a bit heavier than others.
Friday, 13 April 2012
Surgery Date and My Favourite 5 Year Old
Some big Thank You's and Birthdays! Thank you so very much to one of the most wonderful best friends I could ask for for all of her help planning, organizing and participating in the Nanaimo Blood Drive. Thank you ALL of you in attendance (I'll get a list soon!), whether you could donate or not, you were there and took time out of your busy lives for us! I also want to say Happy Birthday to my Mother who has sacrificed so much of her own life for us in this 5 month journey thus far and Happy Birthday to my Brother-In-Law Mike Cato!
(The rest was written yesterday, Friday the 13th)
Exciting (and terrifying) news today, we now have a surgery date set for Friday May 4th. Three weeks from today, nothing like gettin' 'er done!
Braeden's looking better this morning, I actually got a few smiles when I arrived today. He's certainly not feeling himself still but I assume he'll take another few days to a week to bounce back from this latest infection. The antibiotics seems to be taking care of the UTI but his tummy is still quite upset with the bug. They are going to try him back on 1/2 formula and 1/2 EBM (expressed breast milk, yup, still pumping) to see if he can handle it.
I just wanted to take a moment (to have for my records) to say how wonderful my 5 yr old is. I'd like to say it is because of the amazing parenting he's received but alas I think it is just his personality. Now for those of you that don't know Rylan he is so much like me that it terrifies me some days but it comes in handy for those times that he's being devious. It drives him crazy when I know just what he is up to, I've been there and I've done that!
Life for Rylan has not been easy being Torin's brother. It has no reflection on Torin as a brother, it is due to the fact that all of Ry's life, life has been very focused on T. Being as the boys are so close in age (and T has a developmental delay) it has been in many ways similar to raising twins (those of you with true twins might certainly disagree with me). For three years now life has been focused on T and his therapy process. Now we've done all that we can to include Ry in this process but it is still difficult some days and he's asked me more than once, "why is it always all about Torin?". We now have Ry between two special needs brothers and I am hoping he continues to grow and be understanding about it. Life is and will be focused on Braeden (although our home life hasn't changed a huge amount yet) for a long time and when it's not B then it is still about T's therapy in the afternoons (Kelsey is amazing at 'playing with' and including Ry in everything). In spite of this, this kid is amazing! He's empathetic beyond his years and while I might want to hang him by his finger nails some days he's the sweetest Momma's boy you can imagine.
I just cut off two feet of my hair last night to donate it (the whole reason it was so ridiculously long to begin with). I warned the boys beforehand that I was going to do this so that they could be a bit prepared since I was going to look so different. T really didn't care, it's not his after all why would he? But Ry wasn't convinced I was making the correct choice. He didn't ask me not too but he was certainly thinking about it. The boys were in bed when I got home last night so Ry didn't see me till he got up today. He looked at the new do and nodded his head and said it looked pretty good. Rylie is the one I can always rely on for a compliment, he is always quick to tell me when I look nice but he still wasn't sold on the haircut. When I picked him up from school today we were walking down to the van and he said, "You know Mom, I wasn't sure about you cutting off all your hair you know. But you know what Mom, I think you look great, it is really nice isn't it?". Now how is that for a compliment?!
I also have to tell another sweet story about Easter Day when the boys were eating their chocolate and I jokingly asked why no one ever buys me chocolate. I asked Torin if he would share and I got a resounding, "no way!" (which considering how little chocolate and treats I let them eat that is pretty understandable!) Rylan then took his largest chocolate and offered it to me. I told him it was okay, that I was just teasing and he said, "No Mom, you need to have this one, it is important for someone to do something nice for you too!" What a kid!
There you have it, the next time I am ready to sell him, (CHEAP), I can come back and read these examples of why he is my favourite 5 yr old in the whole world (at least till Aug when he turns 6)!
(The rest was written yesterday, Friday the 13th)
Exciting (and terrifying) news today, we now have a surgery date set for Friday May 4th. Three weeks from today, nothing like gettin' 'er done!
Braeden's looking better this morning, I actually got a few smiles when I arrived today. He's certainly not feeling himself still but I assume he'll take another few days to a week to bounce back from this latest infection. The antibiotics seems to be taking care of the UTI but his tummy is still quite upset with the bug. They are going to try him back on 1/2 formula and 1/2 EBM (expressed breast milk, yup, still pumping) to see if he can handle it.
I just wanted to take a moment (to have for my records) to say how wonderful my 5 yr old is. I'd like to say it is because of the amazing parenting he's received but alas I think it is just his personality. Now for those of you that don't know Rylan he is so much like me that it terrifies me some days but it comes in handy for those times that he's being devious. It drives him crazy when I know just what he is up to, I've been there and I've done that!
Life for Rylan has not been easy being Torin's brother. It has no reflection on Torin as a brother, it is due to the fact that all of Ry's life, life has been very focused on T. Being as the boys are so close in age (and T has a developmental delay) it has been in many ways similar to raising twins (those of you with true twins might certainly disagree with me). For three years now life has been focused on T and his therapy process. Now we've done all that we can to include Ry in this process but it is still difficult some days and he's asked me more than once, "why is it always all about Torin?". We now have Ry between two special needs brothers and I am hoping he continues to grow and be understanding about it. Life is and will be focused on Braeden (although our home life hasn't changed a huge amount yet) for a long time and when it's not B then it is still about T's therapy in the afternoons (Kelsey is amazing at 'playing with' and including Ry in everything). In spite of this, this kid is amazing! He's empathetic beyond his years and while I might want to hang him by his finger nails some days he's the sweetest Momma's boy you can imagine.
I just cut off two feet of my hair last night to donate it (the whole reason it was so ridiculously long to begin with). I warned the boys beforehand that I was going to do this so that they could be a bit prepared since I was going to look so different. T really didn't care, it's not his after all why would he? But Ry wasn't convinced I was making the correct choice. He didn't ask me not too but he was certainly thinking about it. The boys were in bed when I got home last night so Ry didn't see me till he got up today. He looked at the new do and nodded his head and said it looked pretty good. Rylie is the one I can always rely on for a compliment, he is always quick to tell me when I look nice but he still wasn't sold on the haircut. When I picked him up from school today we were walking down to the van and he said, "You know Mom, I wasn't sure about you cutting off all your hair you know. But you know what Mom, I think you look great, it is really nice isn't it?". Now how is that for a compliment?!
I also have to tell another sweet story about Easter Day when the boys were eating their chocolate and I jokingly asked why no one ever buys me chocolate. I asked Torin if he would share and I got a resounding, "no way!" (which considering how little chocolate and treats I let them eat that is pretty understandable!) Rylan then took his largest chocolate and offered it to me. I told him it was okay, that I was just teasing and he said, "No Mom, you need to have this one, it is important for someone to do something nice for you too!" What a kid!
There you have it, the next time I am ready to sell him, (CHEAP), I can come back and read these examples of why he is my favourite 5 yr old in the whole world (at least till Aug when he turns 6)!
Klebseilla...AGAIN
The results came back yesterday positive for Klebseilla...again. For those of you following the story since the beginning (and those without a medical degree) Klebseilla was/is the bacteria that led to Braeden's Sepsis in December (Sepsis is Scary Shit). It was not what I was expecting to hear yesterday that is for sure!
The thing with Klebseilla, unbeknownst to me, is that it is actually one of the more common bacterias found in UTI's (urinary tract infection), so it's not as big of a shock really. B's temp is down and he's looking a bit better but is still feeling pretty miserable. He just wanted to be held all day yesterday and I was happy to comply. We are still waiting on some more test results to come in but the UTI seems to be the main cause of the illness. He's been pretty unsettled so far this morning and was really unsettled last night when Mike and I were there to put him to bed. What we DO know is that it is NOT in the blood, his blood cultures came back clear...phew!!!
Another concern right now is that his heart rate is low and has been down into the 60's at times before coming back up. Cardiology isn't too concerned as his profusions look good when he is dropping. His hand and feet are freezing cold though so that's no fun. He did have two 'episodes' on the monitor yesterday when I first got there where his sinus was all out of wack and the heart rate read 180. The monitor beeped and read a VTach (which I don't remember seeing before). I called a nurse in and when he regular nurse came back from break I told her as well. I was stewing about it and so I asked to talk to Rachel (Nurse Practitioner) about it and she reassured me that it wasn't a 'real' VTach and that he was fine. With the combo of those (the low heart rate and VTach) they (Rachel) did order a ECG yesterday to be safe (and to reassure me or shut me up more or less!). Cardiology figures the low heart rate is because of the illness and that it should start to go back up again once he's feeling better.
Nephrology came into see me (well Braeden really) this morning. He was telling me that Neph is thinking that B's Sepsis in Dec was a result of an unchecked UTI. How do you know a 3 week old has a UTI anyhow?? Anyhoo they are concerned that this may very well be his second UTI now and this is a second strike for him therefore they want to do a renal scan to determine if he has VUR (Vesicoureteral Reflux). I asked if this had anything to do with all the cysts in the kidneys and he said not at all. IF he has the reflux the Neph thinks it is only Grade I or II and it can be easily (?) fixed with surgery...yes, he has to be put out to fix it. I asked if they could just 'tack this on' to the existing surgeries we are facing and he figured that would work. So we're in for a renal scan in the next few days (prob next week) where they will insert radioactive dye and do a tracing of the bladder and such. Do you think this kid glows in the dark yet?? Yikes. We already know that B has Hydronephrosis (swelling in the kidney) as they were watching it in utero, so the VUR wouldn't be a long stretch. Let's just add it to the list shall we?
He got fought over to be held this afternoon (I didn't win!) so he is certainly in good hands for his much needed cuddles!
On an exciting note, I lost TWO FEET of myself tonight (yes, willingly). I finally got around to getting my hair wacked off in order to donate it. I will post some pictures when I have a spare moment (ha ha). I'm happy to have it gone but it is a shocking change when you lose that much hair in one go! Thank you to Pam for a great cut and to Jenn for being my support person/photog and hot date! :)
The thing with Klebseilla, unbeknownst to me, is that it is actually one of the more common bacterias found in UTI's (urinary tract infection), so it's not as big of a shock really. B's temp is down and he's looking a bit better but is still feeling pretty miserable. He just wanted to be held all day yesterday and I was happy to comply. We are still waiting on some more test results to come in but the UTI seems to be the main cause of the illness. He's been pretty unsettled so far this morning and was really unsettled last night when Mike and I were there to put him to bed. What we DO know is that it is NOT in the blood, his blood cultures came back clear...phew!!!
Another concern right now is that his heart rate is low and has been down into the 60's at times before coming back up. Cardiology isn't too concerned as his profusions look good when he is dropping. His hand and feet are freezing cold though so that's no fun. He did have two 'episodes' on the monitor yesterday when I first got there where his sinus was all out of wack and the heart rate read 180. The monitor beeped and read a VTach (which I don't remember seeing before). I called a nurse in and when he regular nurse came back from break I told her as well. I was stewing about it and so I asked to talk to Rachel (Nurse Practitioner) about it and she reassured me that it wasn't a 'real' VTach and that he was fine. With the combo of those (the low heart rate and VTach) they (Rachel) did order a ECG yesterday to be safe (and to reassure me or shut me up more or less!). Cardiology figures the low heart rate is because of the illness and that it should start to go back up again once he's feeling better.
Nephrology came into see me (well Braeden really) this morning. He was telling me that Neph is thinking that B's Sepsis in Dec was a result of an unchecked UTI. How do you know a 3 week old has a UTI anyhow?? Anyhoo they are concerned that this may very well be his second UTI now and this is a second strike for him therefore they want to do a renal scan to determine if he has VUR (Vesicoureteral Reflux). I asked if this had anything to do with all the cysts in the kidneys and he said not at all. IF he has the reflux the Neph thinks it is only Grade I or II and it can be easily (?) fixed with surgery...yes, he has to be put out to fix it. I asked if they could just 'tack this on' to the existing surgeries we are facing and he figured that would work. So we're in for a renal scan in the next few days (prob next week) where they will insert radioactive dye and do a tracing of the bladder and such. Do you think this kid glows in the dark yet?? Yikes. We already know that B has Hydronephrosis (swelling in the kidney) as they were watching it in utero, so the VUR wouldn't be a long stretch. Let's just add it to the list shall we?
He got fought over to be held this afternoon (I didn't win!) so he is certainly in good hands for his much needed cuddles!
On an exciting note, I lost TWO FEET of myself tonight (yes, willingly). I finally got around to getting my hair wacked off in order to donate it. I will post some pictures when I have a spare moment (ha ha). I'm happy to have it gone but it is a shocking change when you lose that much hair in one go! Thank you to Pam for a great cut and to Jenn for being my support person/photog and hot date! :)
Tuesday, 10 April 2012
To Surgery We Go!
I know that some of you are waiting patiently for the update for the meeting today so here it goes:
The short(er) version of the day is that Mr. B will certainly have his surgeries. Dr. Brindle is confident (as are all of the Disciplines involved) that is he definitely strong enough to endure all of the surgeries in one fail swoop. The main surgeries will be the Ladd Procedure (for the intestinal malrotation) and the Fundoplication (wrapping the stomach around the esophagus). At the same time she will put in a G-Tube feeding tube (port into the stomach), take out the appendix and repair his umbilical hernia. Michael and I both feel confident with Dr. Brindle and we (that would be me), are mostly at peace that we are making the right decision regarding the risks vs benefits. It is going to be an intensive surgery that will be through a horizontal incision across the top of his tummy. Because the surgery is so large Dr.Brindle has said that doing it as an 'open surgery' makes the most sense.
So now that Michael and I have 'signed off' on the surgery we get to hurry up and wait till Dr.Brindle finds the time to squish Mr.B in since she's booked through till fall! I guess that is what happens when you are the best at what you do. We are looking right now at anywhere from 2 weeks to 8 weeks away, hopefully we'll know sooner rather than later. The nice thing about today was to hear repeatedly around the table from all of the Specialists that they feel he is getting stronger.
We also made the decision today with Neurology that we will start the wean off the Kepra, (anti-seizure meds). She feels like he's at a point that he is ready since he's been seizure free for awhile now. It will be a slow wean to make sure that he has no 'rebound' seizures because of it. When he was having his seizures he was also still in the acute phase of his brain injury so hopefully when he comes off the meds he'll be seizure-free.
Now, current info: Mr.B had a very rough day with me. I spent the better part of six hours there today and he was unsettled through most of it, sleeping for 10 mins and then awake and fussy. His temp refused to go down throughout the day but has finally broken tonight (just got off the phone with his nurse). He was pooping every 20-30 mins through the first half of the day so it was coming out faster than it was going in (too much info?). He is getting fluid through his IV but they did need to bolus him this afternoon as he was certainly getting too 'dry'. They have him on one of the 'big guns' for antibiotics for now and will change it accordingly depending on the test results. By the looks of it we are looking at the possibility of an UTI (urinary tract infection), although we were pretty certain it was a gastro-intestinal bug earlier. He's been switched over to pedialite only for food for at least the next 24 hrs which won't help him grow but it is certainly easier on his little tummy (well, intestine since it doesn't see his tummy!). I am hoping for the ability to get some sleep tonight as I lay awake most of the night last night with the memories of the Sepsis still far too fresh in my mind. It is hopefully just a run-of-the-mill infection and fingers crossed he'll bounce back in a few more days.
The hardest part of the day was this afternoon when they came to do a blood sample and couldn't get my poor duck to bleed. They had to stick him three times (he was dehydrated which didn't help) and she kept pulling it back, putting it in, pulling it back...ugh. The women from the lab were great but it took a lot of restraint on my part not to tell them to go away especially after his sats came down dramatically since he holds his breath when he's good and mad. He was able to come back up with some blow-by (oxygen) and I did cuddle him in between pokes two and three. The lab ladies commented several times how strong he is, uh yep, if you stuck me like that I'd be pissed too!
One thing he did get was love all day today so that always helps. His Volunteer was with him while Mike and I were in the meeting so he was well tended to all day. Thank you to all of you for your positive messages and energy that got sent our way! Let's just call this a 'blip' as we head down the road towards surgery.
The short(er) version of the day is that Mr. B will certainly have his surgeries. Dr. Brindle is confident (as are all of the Disciplines involved) that is he definitely strong enough to endure all of the surgeries in one fail swoop. The main surgeries will be the Ladd Procedure (for the intestinal malrotation) and the Fundoplication (wrapping the stomach around the esophagus). At the same time she will put in a G-Tube feeding tube (port into the stomach), take out the appendix and repair his umbilical hernia. Michael and I both feel confident with Dr. Brindle and we (that would be me), are mostly at peace that we are making the right decision regarding the risks vs benefits. It is going to be an intensive surgery that will be through a horizontal incision across the top of his tummy. Because the surgery is so large Dr.Brindle has said that doing it as an 'open surgery' makes the most sense.
So now that Michael and I have 'signed off' on the surgery we get to hurry up and wait till Dr.Brindle finds the time to squish Mr.B in since she's booked through till fall! I guess that is what happens when you are the best at what you do. We are looking right now at anywhere from 2 weeks to 8 weeks away, hopefully we'll know sooner rather than later. The nice thing about today was to hear repeatedly around the table from all of the Specialists that they feel he is getting stronger.
We also made the decision today with Neurology that we will start the wean off the Kepra, (anti-seizure meds). She feels like he's at a point that he is ready since he's been seizure free for awhile now. It will be a slow wean to make sure that he has no 'rebound' seizures because of it. When he was having his seizures he was also still in the acute phase of his brain injury so hopefully when he comes off the meds he'll be seizure-free.
Now, current info: Mr.B had a very rough day with me. I spent the better part of six hours there today and he was unsettled through most of it, sleeping for 10 mins and then awake and fussy. His temp refused to go down throughout the day but has finally broken tonight (just got off the phone with his nurse). He was pooping every 20-30 mins through the first half of the day so it was coming out faster than it was going in (too much info?). He is getting fluid through his IV but they did need to bolus him this afternoon as he was certainly getting too 'dry'. They have him on one of the 'big guns' for antibiotics for now and will change it accordingly depending on the test results. By the looks of it we are looking at the possibility of an UTI (urinary tract infection), although we were pretty certain it was a gastro-intestinal bug earlier. He's been switched over to pedialite only for food for at least the next 24 hrs which won't help him grow but it is certainly easier on his little tummy (well, intestine since it doesn't see his tummy!). I am hoping for the ability to get some sleep tonight as I lay awake most of the night last night with the memories of the Sepsis still far too fresh in my mind. It is hopefully just a run-of-the-mill infection and fingers crossed he'll bounce back in a few more days.
The hardest part of the day was this afternoon when they came to do a blood sample and couldn't get my poor duck to bleed. They had to stick him three times (he was dehydrated which didn't help) and she kept pulling it back, putting it in, pulling it back...ugh. The women from the lab were great but it took a lot of restraint on my part not to tell them to go away especially after his sats came down dramatically since he holds his breath when he's good and mad. He was able to come back up with some blow-by (oxygen) and I did cuddle him in between pokes two and three. The lab ladies commented several times how strong he is, uh yep, if you stuck me like that I'd be pissed too!
One thing he did get was love all day today so that always helps. His Volunteer was with him while Mike and I were in the meeting so he was well tended to all day. Thank you to all of you for your positive messages and energy that got sent our way! Let's just call this a 'blip' as we head down the road towards surgery.
Monday, 9 April 2012
Happy Easter (with a fever and vomit)!
We survived our second major holiday without our Mr.B at home but it certainly was a bit of a weepy weekend for me. We did have a wonderful 'family' weekend though (sadly without our latest member in tow). I don't remember the last time Michael had all three days off of a long weekend so it was certainly a treat to spend them together. Friday was a lay low with the boys day while I got to spend as much time as I wanted with Braeden (still family time). Well Braeden and the insanity of Costco! Saturday we got to enjoy a brand new tradition of an Easter Egg hunt at the Neufeld Home! So many kids and so much fun! The boys got to finally see Mr.B after being so sick for so long on Saturday so that was a nice treat for Mike and I to all be there. Braeden was asleep on his tummy when we got there and I noticed his back was crusty with a fairly major spit up that had been missed. I was not too impressed with this because B is fed into the intestine, he should not have a very big volume ever to spit up, (the unfortunate part of being there weekends, long weekend especially!). I expressed my concern to his nurse and anyone that would listen but he seemed okay otherwise.
Finally Easter Sunday arrived (there was almost as much anticipation about this day as there was about Christmas for pete's sake!). It was an early start yesterday but we managed to hold them off till after 7am...ground rules were set the night before bed time! The boys had a good morning (while I was weepy in my coffee, feeling another sense of loss with not having B here) and we all trouped up to the hospital to be with Braeden after brunch. Sadly we only made it not even 1/2 way before Ry had a coughing fit and threw up in his lap...sigh. Back home, drop of the smelly stuff and kid while T and I trouped up instead.
Unfortunately yesterday is one of the days that I hate and have no control over...when I arrived Braeden was in his crib screaming his head off (still silently) and tears were coming down his face. It is these moments that torment me when I can't sleep, knowing his needs aren't being met. Now he had a wonderful Nurse Betty yesterday, she's not at fault. She was busy next door and there is only one place she can be at a time as well. It just makes my heart hurt to see him that way when I walk in and then the guilt hits me big time! I quickly unloaded, washed up and scooped him up to find that he was awfully warm against my cheek. Turns our Mr.B wasn't feeling well either! Betty said he'd been okay in the morning but had been getting more unsettled in the afternoon when the fever started up. He's been having some loose stools as well as some more spit ups in the past few days as well so my major concern was that it was an intestinal rotation. It seems as though his tummy is fine when it is palpitated though. It did take two doses of Tylenol to get the fever down yesterday though so my poor duck was just not feeling himself. There in lies the dilemma with not being able to be in two places at once! I had a sick baby on my chest that wanted/needed to be held by Mommy (has to be Mom when your sick!) and a turkey that needed tending to at home. Alas the baby won out and we had a very late Easter dinner. I did the dreaded turkey dinner clean-up (don't mind the cooking, hate the clean up), got boys to bed and then went back up to see Mr.B. Braeden was sound asleep when I got there so I got to give him kiss, nuzzle and then take a big sniff before heading back home.
The report from this morning is that the fever is now up at 38.5 and won't go down (again). My little man has been put on isolation again and I can't be with him...how very frustrating. It is only one day, I know but it is so hard when I know that he probably just wants to be held and I can't be the one to do it while T and Ry are off school. Taking them to the hospital to sit in B's room while he is on isolation is out of the question so now I must sit at home and stew and wait for Mike to get home from work till I can go up...sigh. They have taken swabs orally, blood work and urinalysis so I'll get a call hopefully with an idea of what we are looking at soon. I'm terrified that I'm the reason he is sick! I was (and still am finishing) my antibiotics but what if I had/have a secondary infection that was/is viral? After not being with him for over a week, I guess it is a risk I chose to take, I just hope that it doesn't turn into a chest infection as that will surely end us up back down in ICU. All I can hope is that it is just a brief flu or possible UTI. This kind of day plays into my fear of not being able to be in control, I hate when I can't be in two places at once!
The good news is that the sun is shining, I am getting house work done and I can kick the other two into the backyard for some much needed fresh air. Look at the positives, look at the positives, look at the positives!
Finally Easter Sunday arrived (there was almost as much anticipation about this day as there was about Christmas for pete's sake!). It was an early start yesterday but we managed to hold them off till after 7am...ground rules were set the night before bed time! The boys had a good morning (while I was weepy in my coffee, feeling another sense of loss with not having B here) and we all trouped up to the hospital to be with Braeden after brunch. Sadly we only made it not even 1/2 way before Ry had a coughing fit and threw up in his lap...sigh. Back home, drop of the smelly stuff and kid while T and I trouped up instead.
Unfortunately yesterday is one of the days that I hate and have no control over...when I arrived Braeden was in his crib screaming his head off (still silently) and tears were coming down his face. It is these moments that torment me when I can't sleep, knowing his needs aren't being met. Now he had a wonderful Nurse Betty yesterday, she's not at fault. She was busy next door and there is only one place she can be at a time as well. It just makes my heart hurt to see him that way when I walk in and then the guilt hits me big time! I quickly unloaded, washed up and scooped him up to find that he was awfully warm against my cheek. Turns our Mr.B wasn't feeling well either! Betty said he'd been okay in the morning but had been getting more unsettled in the afternoon when the fever started up. He's been having some loose stools as well as some more spit ups in the past few days as well so my major concern was that it was an intestinal rotation. It seems as though his tummy is fine when it is palpitated though. It did take two doses of Tylenol to get the fever down yesterday though so my poor duck was just not feeling himself. There in lies the dilemma with not being able to be in two places at once! I had a sick baby on my chest that wanted/needed to be held by Mommy (has to be Mom when your sick!) and a turkey that needed tending to at home. Alas the baby won out and we had a very late Easter dinner. I did the dreaded turkey dinner clean-up (don't mind the cooking, hate the clean up), got boys to bed and then went back up to see Mr.B. Braeden was sound asleep when I got there so I got to give him kiss, nuzzle and then take a big sniff before heading back home.
The report from this morning is that the fever is now up at 38.5 and won't go down (again). My little man has been put on isolation again and I can't be with him...how very frustrating. It is only one day, I know but it is so hard when I know that he probably just wants to be held and I can't be the one to do it while T and Ry are off school. Taking them to the hospital to sit in B's room while he is on isolation is out of the question so now I must sit at home and stew and wait for Mike to get home from work till I can go up...sigh. They have taken swabs orally, blood work and urinalysis so I'll get a call hopefully with an idea of what we are looking at soon. I'm terrified that I'm the reason he is sick! I was (and still am finishing) my antibiotics but what if I had/have a secondary infection that was/is viral? After not being with him for over a week, I guess it is a risk I chose to take, I just hope that it doesn't turn into a chest infection as that will surely end us up back down in ICU. All I can hope is that it is just a brief flu or possible UTI. This kind of day plays into my fear of not being able to be in control, I hate when I can't be in two places at once!
The good news is that the sun is shining, I am getting house work done and I can kick the other two into the backyard for some much needed fresh air. Look at the positives, look at the positives, look at the positives!
Friday, 6 April 2012
Autism Awareness
I realized a few days ago that I forgot that I wanted to do a post on April 2 in support of International Autism Awareness Day (World Autism Day). There are now so many wonderful Nations that are supporting this day (and April is Autism Awareness month Internationally, it is October for Awareness in Canada) and different Nations light up buildings and monuments with blue lights (light it up blue) in support of Awareness. The CN Tower participated this year so it is my goal to get Calgary Tower in on it for next year (in my spare time). Mayor Nenshi, any chance you're reading this??
1 in 70 of our boys worldwide with be diagnosed with Autism (1 in 110 girls), that is shocking to me. 1 in 70. I don't have the time to even start hypothesizing this one or letting you know what my ideas are that is for a different blog!
Now the truth to the post is that I wanted to shout out how blessed I am to have a child with Autism, truly blessed. Torin is a light like no other in our lives and any of the lives he touches. He is such a sweet, loving, unique and kind boy who just happens to have Autism. Torin has Autism, he is not 'Autistic' or defined by having this disorder. There is so much misconception in our society about Autism that it still shocks me. "Autism, what's that?" Wha?! Granted before Torin was diagnosed I didn't know all that much about Autism but I surely knew what it at least was. I also have a VERY clear memory of watching Jenny McCarthy on Oprah telling her story of her son Evan and looking at my sweet baby Torin (who was around a year old) and thinking, I'm SO glad that I don't have a child with that. Gee, thanks Murphy! That just the point though, you don't know what you are going to get when you have a child! I often think of doing a separate blog on raising a son with Autism but then I think I would also have to do a blog now of raising a typical child smooshed between two special needs brothers! :)
I have had all kinds of comments from people when they find out about Torin's diagnosis ranging from "Are you sure? He doesn't seem Autistic!" to, "Well at least you are lucky he is high functioning!". What the heck were they (whomever 'they' are) thinking when the term 'high functioning' came to be? What does that mean? If I drive a car and you don't does that make me a higher functioning individual than you? Hmm. Yes, Torin can carry on a conversation (mostly with adults and especially if it is about elevators or phones) and yes, he attends a 'typical' school with 'typical' peers but the term 'high functioning' is just ridiculous. We try so hard to teach our kids to blend into our typical society but in reality it is not at all what our lives are like. Torin might not be rocking in a corner or banging his head against a wall but he still is a very unique individual. I can't say I've met too many other people who have their 7 yr olds trolling YouTube for elevator videos for hours on end or different Websites for Panasonic Phones (it's the very best brand for a reason that alludes me still). It is who he is and why he touches so many lives. People are struck when they meet Torin and fall in love with him. He is charismatic in such a wonderful, positive way. He might not be able to figure out why kids do what they do (I mean have you ever watched kids play? They change direction of their play randomly!) or have the ability to successfully communicate all his needs without having a breakdown but he is a very 'functional' kiddo with a disorder.
The world at large needs a better understanding of these kids since we are producing them at an alarming rate now (the book I started is sadly on the very far back burner for now). Just know, like any typical kids, none of these kids are the same, they all have different needs and issues. So please note just because you may know a child with Autism you still may not have a huge understanding of Autism. The worst thing we can do in life is make assumptions!
If anyone had told me 7 years ago that I would be a parent with two special needs kids I would have told them they were crazy that I couldn't be that parent, I'm not qualified! Of course if someone told me I was going to be crazy enough to have three boys, well...! I can't imagine life any other way now. I am thankful for all three of my boys as they all bring light and joy to my life in their individual ways. I guess that is partly why Mike and I can remain 'less' (?) freaked out about the 'unknown' that is Braeden. We feel at least partly equipped to deal with Braeden's needs as they arise. One huge positive is that I know the funding that is available and how to access it now!
I always thought it took an extraordinary individual to work with or raise special needs kids, all it really takes is love. I'm not saying my life is easy, it certainly is not but it is the life that I've been given and we just make the most of it. There are many days that I wish for a crystal ball but in many ways I don't think I want to see my future. I want to continue to live my life on a day-to-day basis and continue to be amazed by all three of my children and the unadulterated J-O-Y they give me.
Some links if you are interested:
Autism Society of Canada
Autism Canada
Autism Speaks
Autism Awareness
Tuesday, 3 April 2012
Loving Spark (or Scorch)
This is Mr. B loving Spark (or Scorch as his tag says)
Well I still am feeling somewhat like crap, and it is getting a bit ridiculous! I went back to the Dr today to make sure that I'm actually on the right antibiotics as I'm still coughing up the 'green' (sorry!). I asked the Dr if I am contagious and he says "Probably not", yeah that 'probably' doesn't cut it when you have a child with chronic lung disease! I'm told that the cough can last upto 5 weeks though, not looking too forward to that! The boys seem to be on the mend for the most part but are still hacking whenever they exert themselves, which for young boys is all the time!
I did go and see Mr.B yesterday, my nerves couldn't take it anymore! I can't sleep and am having anxiety about all kinds of silly things these days which means my stress is through the roof (not really surprising). He was so sweet and smiled for me even behind all of my 'gear' (gown, gloves and mask). I didn't stay long, just enough time to deliver laundry and pick up new laundry really. I held back from seeing him today but think that with being really careful I'll resume my hospital home tomorrow.
I did stay long enough yesterday to touch base with his Nurse Practitioner and Dr. They are looking at putting B back on C-Pap (groan) for when he is at rest. He is able to sustain himself (mostly) during the day but will d-sat at night once he gets into a deep sleep. The hope is that he'll be able to be just on regular oxygen during the day and then C-Pap for when he is sleeping. Sigh, I know he can't come home till he is off the high-flow but he really hates the C-Pap. The 'trial' for it will have to be done in the ICU, so back downstairs we'll have to go for a week or so. I did ask if this was worth it since we're looking at surgery in the next month but the Dr figures we've got time to do a decent 'trial' before the surgery date. They have also decided to withhold changing his NJ back to an NG (feeding tube) for now till after they do the C-Pap trial due to the fact that C-Pap pushes air into the stomach. Still sighing here.
No news on the surgery date as of yet, we are hoping to have our meeting this week still. Although it is Tues and I've still not heard being as it is supposed to be tomorrow...
He is gaining weight steadily (not too hard to do when you are fed 24/7) and is getting daily time for therapy which is great. He is generally a pretty happy baby all things considered and has a good group of 'Guardian Angels' that watch over him each week. I'm so very blessed with the wonderful friends that we have!
It is very difficult to face yet another major holiday without our little man at home, he is having a lot of his 'firsts' in the hospital. He'll (we'll) be celebrating his 5th month Birthday on Good Friday as well, oh how time flies (yet also seems to stand still at times). I'm sure the Easter Bunny will figure out where to find him...
Such a sweet boy we have!
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