The best way to describe Braeden right now is "stably unstable" or as one nurse put it, "critically stable". He is still struggling desperately with this new addition of the blood infection. He is getting his 7th transfusion of platelets as I write this, his number this morning was back down to 12 (it should be closer to 100). This 'klebselia pneumonia' is a wicked bacteria that is eating all of his platelets as fast as he can get them! He did lose almost 900 grams of fluid yesterday, which is close to two pounds but he is still horribly swollen as the Dr said he still has 1 1/2 kilos (over three pounds), of fluid left to lose to get to his 'dry weight'. We did have a period overnight again when his kidneys decided to stop working again but he came back and fired them back up (only to pee on the night nurse!). The positive is, although when he heard my voice yesterday he did his heart wrenching silent cry, he did grab onto my finger with some force. This may not seem like much but the fact that he isn't laying there as a limp noodle anymore comes as such a relief, he is fighting back.
He has still been having quite a lot of difficulty keeping his heart rate up (it should be 120-160 and he's been dipping between the 70s-90s). The Cardiologist is concerned that when his kidneys stopped working his body didn't process the Sotolol (heart beta blocker meds) and it built up in his system and that is causing the low heart rate and the brady (brachacardia) episodes (when it dips down to the 40s). They are holding off on his doses until his heart rate stays in the 100 range for a period of time. This seemed to work last night but he was back to the same issue this morning. On top of this he does have a 'leak' in his DA that when they stitched it didn't stay closed. This means that he has a very loud murmur and that it might result in a second surgery down the road if it doesn't resolve.
The Neonatologist is still waiting to do the lumbar puncture to check for meningitis but Braeden is still too swollen to get a 'clean punch'. I was always under the naive assumption that meningitis was a 'illness' in and of itself but it simply is a name for an infection in the menges (the fluid between the vertebrae and around the brain). If Braeden does have meningitis (the klebselia pneumonia in his menges), then it is already being treated by the course of antibiotics that he is on but it would mean that he would receive three weeks of antibiotics, not two. Another puzzling thing (which is somewhat concerning) is the antibiotics that he was on (for his blood in his stool, possible necrosis), while getting this bacterial infection should have able to fight this infection. The Dr isn't quite sure how he ended up with this particular bacteria while on antibiotics sensitive to this type of bacteria.
I am trying desperately to stay away from the NICU today as we spent the night cleaning up after Torin with the flu and Rylan has a nasty cough. I'm not sure if I can do it though, I am so (hormones at the ready) in tuned to this baby that it all but kills me to not lay hands or eyes on him for a 12 hr period. It is even more difficult because he knows when I am there and I can't help but think he must wonder where I go at times (I'm sure this isn't quite how it works but still).
Through all of this Braeden has remain resilient and is working hard to come back to us again. It is very difficult to see him so horribly swollen and (for lack of a better word), misshapen. This blood infection is just another (albeit huge) step to bringing him home to us however that may look (whether he'll be on oxygen and medications). I have been holding it close to my heart that he may be home for Christmas but that doesn't seem to be the way we are heading just yet. Christmas will happen regardless, it just means some of it will be spent in the NICU is all.
Friday, 9 December 2011
THIS is the Way to Wake Up
This post isn't about Braeden (I'll write his next), it is about the amazing and wonderful support from those people in our lives.
Let me tell you what I awoke to this morning after spending the night cleaning up after a puking 6 yr old. I wish I could play it for you but if you were listening to CJAY 92 this morning you might have heard it:
I woke up to the phone ringing (and cursing that I didn't take it to bed with me 1/2hr earlier like I thought I should). The other end of the phone line belonged to Gerry Forbes and my sweet guardian angel, Jodi Hughes. For those of you not from Calgary, Gerry is from the CJAY radio station's morning show and Jodi is my own personal local celebrity! Jodi does a morning show on 1060 with her Dad, Jimmy Hughes (and I've caught up on my country oldies because of them) as well she is sometimes (hopefully you'll see her every weekend now) on CBC TV news doing the weather. Unbeknownst to me, Jodi nominated our family for the CJAY 92 Secret Wish, which is Calgarians helping other Calgarians in need. It came as an incredible shock and I have to say the 'interview' was certainly not scripted as I'm almost certain I came across as a bit of a dork! (and when I called Jodi 'huge' I meant her HEART!!!) :) As a result of the nomination we have been blessed with gifts for all three boys (Santa Jodi must have gotten T and Ry's Santa letters because she bought them the thing they both desperately want this Christmas), gift cards and cash to help us out. As if that weren't enough, our truly selfless friends of The Highwood Playschool got together and raised $800 of their own money to help us. This is what makes me cry! You all are such amazing women (and men), the kindness you have all shown us already with the pre made meals and kind, supportive words, coffees etc. have been over and above to what I ever could have hoped for or expected. When I phoned Mike, in his shock he said, "but the kids don't even go to the playschool anymore!".
I can't put into words how difficult the past six weeks have been for us as a family, it was certainly not something that we could have prepared for. The reason I have been able to remain 'strong' is because of all of the support we have received. The CJAY Wish is just icing on the already well decorated cake. I am asked daily how people can help and my answer is always, "I really don't know", but you have all still managed to help, each in your own way whether it is the offer of help, pre made dishes so I don't have to cook, or the offering of kindness and words! I'm not one that has ever been able to ask for 'help' when I needed it, so again, thank you.
One thing I have always been blessed with is an amazing family, supportive parents and three big sisters (each with their own angel status for always standing by me and picking me up for the past 37 years). And who could have asked for such an incredible extended family and in-laws? On top of all of this we have such an outstanding network of friends!
Thank you really doesn't seem to be big enough words but that's what we are so very thankful for each and every one of you!!
Braeden is already so watched over that he really won't be able to get away with much once he does come home!
Much love and so many thanks!!!
Wednesday, 7 December 2011
Swollen to the Brim
If only there were some way to covey the sigh that just escaped my lips as I sat down at the computer. I thought this baby was already keeping me up nights but the last 36 hrs has been some of the hardest hours yet.
Braeden has put on THREE pounds of fluid, yes, three. His body is so over loaded with fluid that he is now basically back to where he was when he was born. He is over 9 lbs now and since he'd not lost all of his 'birth fluid' he is almost 4 lbs of fluid and 5 lbs of baby. He has gained most of the fluid from the waist up again, his head being the absolute worst. I was so thankful this evening that they were able to shift his head slightly because his head was so misshapen earlier when I was in because of the 'pocketing' of fluid. As it is his eyes are swollen shut (not to mention he looks like he took on GSP and lost). I know the extreme pain and discomfort I felt with my swelling that it makes me physically ill to know that he is having to go through this yet again.
The big excitement (and not in a good way) was the collapse of his left lung while being on the ventilator. They have re-compensated for this and it is looking better now this evening. He is also moving more (what he can move with the swelling) to the point that his nurse Lisa put a cloth over his arms to slow him down.
He is actually less stable than he was last night (the collapsed lung doesn't help) as he desats (blood pressure and heart rate drops) almost instantly when handled/touched. This is a pretty precarious state to be in and the nurses are doing everything they can to only touch him when absolutely necessary.
The 'good' news is that he is now off isolation. The Infectious Disease Dr. has approved that he is on the right blend of antibiotics/steroids, so no more hazmat suits (well gowns and gloves). He is also outputting urine well, which makes all of us happy that he is processing some of the fluid. His platelets are still showing up as a problem, he is unable to maintain them so he got transfused for the fifth time with platelets tonight. Did I mention how much I respect those of you that give blood? It really is the gift of life for my child, thank you!!!
I did get a chance to see Dr.Fruitman (the fabulous cardiologist), tonight and picked her brain a bit. She told me that his echo cardiogram looked good today and the coarctation site looked great. He does still have mild fluid leakage in his ductus but she was relatively unconcerned about it. She is happy with his progress up till now (aside from this blood infection) and thinks that he should show improvement again soon.
All in all although he is certainly not stable but he is improving slowly. The antibiotics will start to take effect more and more as the days go on and he is moving more and more which will assist with the fluid. He is such a little trouper and is fighting the good fight for all of his supporters.
Michael tells me (tongue in cheek) that we need to be careful when he does come home that this kid doesn't get everything he wants. I know I don't plan on putting him down the next time I am allowed to hold him and at this point he can have as many ponies as he wants!
Braeden has put on THREE pounds of fluid, yes, three. His body is so over loaded with fluid that he is now basically back to where he was when he was born. He is over 9 lbs now and since he'd not lost all of his 'birth fluid' he is almost 4 lbs of fluid and 5 lbs of baby. He has gained most of the fluid from the waist up again, his head being the absolute worst. I was so thankful this evening that they were able to shift his head slightly because his head was so misshapen earlier when I was in because of the 'pocketing' of fluid. As it is his eyes are swollen shut (not to mention he looks like he took on GSP and lost). I know the extreme pain and discomfort I felt with my swelling that it makes me physically ill to know that he is having to go through this yet again.
The big excitement (and not in a good way) was the collapse of his left lung while being on the ventilator. They have re-compensated for this and it is looking better now this evening. He is also moving more (what he can move with the swelling) to the point that his nurse Lisa put a cloth over his arms to slow him down.
He is actually less stable than he was last night (the collapsed lung doesn't help) as he desats (blood pressure and heart rate drops) almost instantly when handled/touched. This is a pretty precarious state to be in and the nurses are doing everything they can to only touch him when absolutely necessary.
The 'good' news is that he is now off isolation. The Infectious Disease Dr. has approved that he is on the right blend of antibiotics/steroids, so no more hazmat suits (well gowns and gloves). He is also outputting urine well, which makes all of us happy that he is processing some of the fluid. His platelets are still showing up as a problem, he is unable to maintain them so he got transfused for the fifth time with platelets tonight. Did I mention how much I respect those of you that give blood? It really is the gift of life for my child, thank you!!!
I did get a chance to see Dr.Fruitman (the fabulous cardiologist), tonight and picked her brain a bit. She told me that his echo cardiogram looked good today and the coarctation site looked great. He does still have mild fluid leakage in his ductus but she was relatively unconcerned about it. She is happy with his progress up till now (aside from this blood infection) and thinks that he should show improvement again soon.
All in all although he is certainly not stable but he is improving slowly. The antibiotics will start to take effect more and more as the days go on and he is moving more and more which will assist with the fluid. He is such a little trouper and is fighting the good fight for all of his supporters.
Michael tells me (tongue in cheek) that we need to be careful when he does come home that this kid doesn't get everything he wants. I know I don't plan on putting him down the next time I am allowed to hold him and at this point he can have as many ponies as he wants!
Tuesday, 6 December 2011
Sepsis is Scary Shit
For those of you that read this post already, I added more information when I had time to sit down and process it. It is not a pleasant post, I'm just saying it like it is, as this is our life.
Our sweet boy is still in critical condition but is at least in a somewhat stable state. I guess for Braeden it is just another state of critical as he's been in different forms of this state since before birth. (For those of you that that comment that you think I am strong, it is not a state of mind at this point, I think it is more a state of denial).
The good news today is that Braeden is responding somewhat to the antibiotics they've got him on. The not so good news is that it is a blood infection that he is fighting, he is dealing with severe sepsis. (don't read the link if you are weak of heart, it is seriously scary shit we are dealing with here) http://en.wikipedia.org/wiki/Sepsis Yes, this is as scary as it sounds. He has picked up a bacteria at some point and it has found it's way into his blood. It is affecting all parts of his body, the organs being the most susceptible and he has severe inflammation and pain. His blood pressure had been dramatically altered and his kidneys were shut down (which is how the body tries to preserve itself when forced into a critical state). They have been in contact with Infectious Diseases and they are in the process of narrowing it down. They have a good idea of what it is but it needs to continue to grow (in their petri dishes) to get the complete picture.
His poor little body looks as though he has put on an entire pound of fluid in 24 hrs, it has set him back about two weeks or so. Which I suppose wouldn't be much in the scheme of things but when you are only 4 weeks old...
I was very relieved to see that he did attempt to crack open an eye for me today but they are too swollen to open anymore. He is responding to stimulus today as well, granted it means he can show he is in pain but at least it is a response. I'll take suffering through watching him grimace and cry out verses not reacting at all to being poked with a needle yesterday. He is also finally out putting urine which is fantastic news, those kidneys are fighting back (again).
They have also had to remove all of his lines due to the infection and will continue to run new IV's (a whole lotta pokes) for the next 14 days during his course of antibiotics. They won't be able to put any more permanent lines in until the infection comes back negative. It is going to be a LONG 14 days for all of us.
I'm feeling so run down with the addition of this, as is Michael (which I think it is safe to assume so do my Mom, T and Ry as well). We appreciate all of the kindness and positive thoughts that you are all still offering us, please continue with them.
Our sweet boy is still in critical condition but is at least in a somewhat stable state. I guess for Braeden it is just another state of critical as he's been in different forms of this state since before birth. (For those of you that that comment that you think I am strong, it is not a state of mind at this point, I think it is more a state of denial).
The good news today is that Braeden is responding somewhat to the antibiotics they've got him on. The not so good news is that it is a blood infection that he is fighting, he is dealing with severe sepsis. (don't read the link if you are weak of heart, it is seriously scary shit we are dealing with here) http://en.wikipedia.org/wiki/Sepsis Yes, this is as scary as it sounds. He has picked up a bacteria at some point and it has found it's way into his blood. It is affecting all parts of his body, the organs being the most susceptible and he has severe inflammation and pain. His blood pressure had been dramatically altered and his kidneys were shut down (which is how the body tries to preserve itself when forced into a critical state). They have been in contact with Infectious Diseases and they are in the process of narrowing it down. They have a good idea of what it is but it needs to continue to grow (in their petri dishes) to get the complete picture.
His poor little body looks as though he has put on an entire pound of fluid in 24 hrs, it has set him back about two weeks or so. Which I suppose wouldn't be much in the scheme of things but when you are only 4 weeks old...
I was very relieved to see that he did attempt to crack open an eye for me today but they are too swollen to open anymore. He is responding to stimulus today as well, granted it means he can show he is in pain but at least it is a response. I'll take suffering through watching him grimace and cry out verses not reacting at all to being poked with a needle yesterday. He is also finally out putting urine which is fantastic news, those kidneys are fighting back (again).
They have also had to remove all of his lines due to the infection and will continue to run new IV's (a whole lotta pokes) for the next 14 days during his course of antibiotics. They won't be able to put any more permanent lines in until the infection comes back negative. It is going to be a LONG 14 days for all of us.
I'm feeling so run down with the addition of this, as is Michael (which I think it is safe to assume so do my Mom, T and Ry as well). We appreciate all of the kindness and positive thoughts that you are all still offering us, please continue with them.
Monday, 5 December 2011
One of Those Days
One step forward...two steps back again...
Braeden is one sick little duck again today, he has an infection that has colapsed one of his lungs and is rendering him a limp noodle. The nurse/Dr is assuming it is VAP which is a type of pneumonia, which would make sense with the intubation of the surgery, the transport, the three hospitals in under a week, I could go on. They reintubated him this morning after attempting to give him back the CPAP (nose mask/prongs). He was just struggling too much that they didn't have a choice and had to intubate. He was also running a high fever this afternoon which is not normally seen even in sick babies. They have had to give him two transfusions of platelets today and one whole blood transfusion as well. They are trying to stablize his extremely low blood pressure by the transfusions and pumping him back up with saline. As of tonight his blood pressure had come back up but my poor little boy is completely puffed out again. He looked different in the short span of seeing him this afternoon to seeing him tonight. It is shocking to me how sick they can get and how quickly it can happen. Michael and I spent the afternoon with him yesterday (Daddy finally got to hold him after 27 days) and he was looking okay. I did comment that he was looking a bit pale but otherwise was okay. The first thing that we did start to notice is that he started having brady episodes (brachardia, low heart rate) during our visit. His heart rate would dip down to 45 for a few beats and go back up. His nurse just chalked it up to healing and such. Unfortunately as the night progressed he got sicker and sicker until they intubated early this morning.
It is hard on days like today to be positive, my little boy looks so very sick tonight and is completely limp. It is hard to take that is for sure and even harder to watch, unable to do anything. They did get the results back tonight that are positive for infection and they will know by tomorrow morning what it is exactly so that they can tweak the new antibiotics. The sad part is that he just finished two rounds of antibiotics for the blood in the stools and was given EBM (breast milk) for the first time in 7 days yesterday only to be hauled off food again today and started on a new round of antibiotics. Hopefully with the test results tomorrow they will now forgo the spinal tap they had been postponing till his blood pressure stablized.
All in all it's been a rough day. It is never a good day when the Neonatologist calls you with news first thing in the morning. Will try for a bit more lively tomorrow since tomorrow is yet another day.
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| Back to intubated and getting sicker...oh my heart aches |
All in all it's been a rough day. It is never a good day when the Neonatologist calls you with news first thing in the morning. Will try for a bit more lively tomorrow since tomorrow is yet another day.
Sunday, 4 December 2011
A Violent Person??
I haven't blogged in the last two days because everytime I start I get angry all over again.
I was SO concerned that they would leave my breast milk in Edmonton as I was pumping the whole time we were there because Squeak was still on a NPO order (no food). Since we didn't know how long we would be in Edmonton, they sent up the storage that I had from Foothills as well. I didn't want any of it left behind since I am having such a hard damn time getting much of anything still (yeah, it could still change, I know). I was so concerned that the nurse actually put a sign ON Braeden so that the Transport nurses would see it and get the milk out of the freezer. When I got to Children's yesterday (I forgot to ask the night before, big damn mistake!), I heard the WORST words that any nurse could have uttered to me, "We are very sorry about your milk". Now, you are thinking that they forgot it right? That it could still be sent down, right?? NOPE!!! They BROUGHT it down and put it in the fridge, NOT THE FREEZER. Because it was already frozen, if you defrost it you have to use it, it CAN'T be re-frozen....can't. They had to throw out all of the milk that was more than 48 hrs old. Braeden has been off food for 7 days, I am pumping 7-8 times a day...you do the math. I was SO crushed. I immediately burst into tears, no surprise there, but then just started to laugh (abeit a bitter laugh). Seriously? I mean it just seems to be the way, why not throw another thing at me? If I wasn't prone to be a violent person before I certainly could become one now! Do they think THIS will help my milk supply? They reassured me that they would file a report so that it wouldn't happen again but that is little consolation to me when this is what Braeden, needs most of all. I truly believe that the blood in his stools are from a reaction to the formula they are using, as both Torin and Rylan had issues with pre-done formula (but not the mixed powdered).
SIGH! I am trying to let this go, there is nothing I can do about it and being angry won't change anything either so enough said. As Jean would say, "Thanks for listening".
I have wonderful things to write about the RMH still so that will be my next post, I didn't want to sully it with my annoyance at the world in general (or the dumbass that screwed up royally).
I was SO concerned that they would leave my breast milk in Edmonton as I was pumping the whole time we were there because Squeak was still on a NPO order (no food). Since we didn't know how long we would be in Edmonton, they sent up the storage that I had from Foothills as well. I didn't want any of it left behind since I am having such a hard damn time getting much of anything still (yeah, it could still change, I know). I was so concerned that the nurse actually put a sign ON Braeden so that the Transport nurses would see it and get the milk out of the freezer. When I got to Children's yesterday (I forgot to ask the night before, big damn mistake!), I heard the WORST words that any nurse could have uttered to me, "We are very sorry about your milk". Now, you are thinking that they forgot it right? That it could still be sent down, right?? NOPE!!! They BROUGHT it down and put it in the fridge, NOT THE FREEZER. Because it was already frozen, if you defrost it you have to use it, it CAN'T be re-frozen....can't. They had to throw out all of the milk that was more than 48 hrs old. Braeden has been off food for 7 days, I am pumping 7-8 times a day...you do the math. I was SO crushed. I immediately burst into tears, no surprise there, but then just started to laugh (abeit a bitter laugh). Seriously? I mean it just seems to be the way, why not throw another thing at me? If I wasn't prone to be a violent person before I certainly could become one now! Do they think THIS will help my milk supply? They reassured me that they would file a report so that it wouldn't happen again but that is little consolation to me when this is what Braeden, needs most of all. I truly believe that the blood in his stools are from a reaction to the formula they are using, as both Torin and Rylan had issues with pre-done formula (but not the mixed powdered).
SIGH! I am trying to let this go, there is nothing I can do about it and being angry won't change anything either so enough said. As Jean would say, "Thanks for listening".
I have wonderful things to write about the RMH still so that will be my next post, I didn't want to sully it with my annoyance at the world in general (or the dumbass that screwed up royally).
Friday, 2 December 2011
Homeward Bound
So there you go, heart surgery and flying home all within three days! Braeden looks good today, so much more like he did before surgery. He peeked open his eyes a few times today and even smiled, what a little trouper! I am so in awe of this child and his ablity to heal himself!!
Braeden has been taking on more and more fluid unfortuantely so he is looking considerably more swollen today. His little cheeks have puffed right out today again as did his eyes. Ironically I feel more swollen today soon, pretty sure this 'mirror syndrome' was supposed to end when the cord was cut! His blood work is stable, we are still concerned with the haemoglobin levels but not enough that they feel they need to be concerned here. He still has a very long road ahead of him, we are planning on being at Children's for awhile still, but we at least have this huge road block/accomplishment behind us. He is stable enough to travel and that is what matters!
We can't really say enough about our stay at the RMH, this is such an incredible organization! We got to see many familiar faces in the kitchens/common areas here that we also saw outside the NICU or the PICU at Stollery. The staff here are wonderful (no big shock there) but the experience for the boys is what is so important. We are just tidying up our room (loving watching Michael mop the floors and scrub the toilet...), then the boys get to go pick out their quilts for themselves and Braeden. Then it is onto the MAGIC ROOM, I will have to include a photo because I couldn't explain it well enough with words. The boys get to pick out a brand new toy to take home for themselves. The way they support the siblings here is so heartwarming, they obviously pay attention to the needs of the entire family! The boys are both teary eyed about leaving Edmonton (as am I) and the hard part is explaining why we can't come and stay here again (at least I hope to hell we will never need to!!). Torin is convinced that we need to live in Edmonton. I'm thinking he was loving all the family that we got to see and not to mention the spoiling they got from their Great Aunties here!
Off we go! Braeden should be in the air anytime now and we'll be following shortly.
We can't really say enough about our stay at the RMH, this is such an incredible organization! We got to see many familiar faces in the kitchens/common areas here that we also saw outside the NICU or the PICU at Stollery. The staff here are wonderful (no big shock there) but the experience for the boys is what is so important. We are just tidying up our room (loving watching Michael mop the floors and scrub the toilet...), then the boys get to go pick out their quilts for themselves and Braeden. Then it is onto the MAGIC ROOM, I will have to include a photo because I couldn't explain it well enough with words. The boys get to pick out a brand new toy to take home for themselves. The way they support the siblings here is so heartwarming, they obviously pay attention to the needs of the entire family! The boys are both teary eyed about leaving Edmonton (as am I) and the hard part is explaining why we can't come and stay here again (at least I hope to hell we will never need to!!). Torin is convinced that we need to live in Edmonton. I'm thinking he was loving all the family that we got to see and not to mention the spoiling they got from their Great Aunties here!
Off we go! Braeden should be in the air anytime now and we'll be following shortly.
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| Entrance to the "Magic Room" |
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| Two VERY happy and loved boys! |
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