A lot has happened since my last up dated.. things move so fast it was hard to keep up. First off Fox is HOME!!!!!
But before he got discharged he had more surprises for us before he was ready to be sent home. Right when his lungs were looking great and the Docs we ready (literally during rounds) to discharge him from the critical care and up to the step down cardiac floor, Fox's heart skipped right from 140bpm to 258bmp. It was terrifying they tired many things to bring it down and nothing was working so they ended up using electricity to "pace" his heart back sticking a probe down his nose and close to his heart and shocking or pacing his heart to speed up his heart so that is all the rhythms would catch up and start back at his normal rate. It took a few tries but it worked. He had 3 of these episodes, they called them arterial flutters. They started him on propranolol to help lower and regulate his heart rate. Eventually it looked like it started to work. And then his heart rate started to drop from 130 to the 80's and then jump back up. They call his bradycardia. His heart rate still leaps around so there is something wrong with his electrical circuit. I'm really hoping that it settles out and is controlled with drugs or he would need a pace maker. But for right now his body is tolerating it and the heart drugs are working to help control the episodes to a reasonable level.
When the Doctor told me he was gonna be discharged I started to cry as soon as she left the room. I was so happy and his whole month long journey the ups and the downs flashed through my body. Getting ready to leave was a blur.... there wsa so much information and getting his drug schedule all worked. He had to pass a car seat test, where he sits in the car seat for a hour and they check to see how much his sats drop. He passed and we were finally on our way home!
The whole train ride I found myself trying to hid my tears, I was so excited and I just overwhelmed with everything was my little Fox has gone through. I mean really no mother should see their child's heart and lungs. It was a scary start to life, but he made it through. Thanks to all sick kids, the nurses the Doctors , and the surgeons esp Dr. Van Arsdell who saved Fox's life. What do you say to someone like that... Thank you .. but that doesn't feel even close to enough. Without the support of my Family and Friends and everyone who was praying for Fox and sending good vibes I would have not been able to get through this. THANK YOU.
The first couple days home have been a dream come true such a Christmas miracle! I LOVE being back home with Tripp and Everly-Rose, and Brandon they are so fun, and loving. I'm so blessed!
Fox has his Cystic Fibrosis test tomorrow and they said we will know the results by friday.. I'm nervous but whatever it is I know we can get through anything!
On Friday he has his first Cardiology appointment at CHEO. I will keep updating...I know Fox needs more surgery in the near future and then more after that. His Journey has really just begun but I know he will continue to be a fighter and get through each hurdle one at a time:)
Wednesday, December 21, 2011
Monday, December 12, 2011
Roller coaster
Parents and Doctors who have gone through and seen what these heart babies go through told me that it would be a Roller coaster ride and it is. I feel like Fox is on one of those old woodden one's- The type that thrill seekers enjoy and it's rattling around joilting you left to right, bumpy, and sometimes when you finally get off the ride it leaves you buised. I feel like that kid who got tricked on going on the ride and is screaming to get off and can't wait to be on soild ground again. I think every parent would be that kid screaming to get off... but I'm still holding on.
Where do I begin ...really I should write my blogs more often because so much changes for him in just a few hours. Last time I posted I said he got another collasped lung and developed pneuomia.... literally 30 mins later they tell me his blood culture came back (they said it would take days but it already started to grow something 12 hours later!) he has a blood infection I can't remeber what it's called it sounds like cockeye haha.. no but really some of these medical terms are so funny.
His lung and blood infection looks like it will take a couple weeks to fully clear up. The other thing that came up the next morning when I came in honeslty pissed me off.. The damn night nurse, who I can't go without saying seemed a little off I don't know why, she was nice enough but just I felt something was amiss with her. Turns out the lady just left Fox basically all night on his right side...because he was sleeping so well.. ugh he always sleeps but he wont even really wake up if you just move him to turn him. But you HAVE to turn them if they have infectious fluid in their lungs because their lungs are sticky and if compressed for too long they collapse... So YES the stupid nurse gave my son a right lung collaspe. As if he didn't have enough on his plate. BUT wait I'm not finished I still have a little more rant left... The pharmacy messed up big time.. now I say big time because a mess up like that could of killed him.. luckily he was okay. They filled the doctors order for one of the antibiotics filled it with the WRONG antibiotic and labled it WRONG so it was labled as if it was the proper antibiotic. The nurse checked it.. it said what is was suppose to be and she gave it to them. Hours later they figure out it was the wrong medicine. THANK GOD it was just an antibiotic.. but still what if he was allergic to it? A women came in and explained the whole thing to me and told me there was going to be an investigation on the women who did it and how it happed and that she is on probation for now. This freaked me out!.. as she was telling me this my son was getting a blood transfusion and I made her check to make sure it was the right blood.. esp since he is 0-, She assured me it was a one in a million chance that this happend and that they will bring with inccident up at the safety meeting this week. That didn't make me feel better.
He isn't tollerating his feeds as well as he is .. but on this one I feel like they are overacting a bit I think he has an upset tummy. Other than that big news!!! they took him off the ventilator about an hour ago but we still have to wait 4 hours til they feed him he hasnt eaten since 12pm he must be starved! poor man. But they just want to make sure that he doesn't have to be re-intubated. As of when they kicked me out of the room he was under that cube box oxygen thing. I hope when they let us back in in 15 mins his still is doing good.. I get so nervous.
So that's most of the Fox updates.
I really enjoyed seen my family this weekend but it kills me when they are gone. I honestly feel like I can't handle this much more. I asked today about getting Fox transferred to CHEO but that seems to be a no go.. but I'll keep bugging.
Tripp and Everly-Rose need their mommy too... :( I feel like I'm choosing Fox over them sometimes, but I don't have choice he needs me more now then ever... and I just hope that the kids will understand that. And as Everly-Rose and Tripp go up and we talk about this time I hope they never feel like I left them. I hope they realize I want to be with them so badly. Every night I think about ways I could make it work better for everyone, but I just can't come up with one.
I also hope my husband realizes what a great dad he is and how much he is doing for this family and that me and Fox miss him.
5 more days til I see them again:(
Where do I begin ...really I should write my blogs more often because so much changes for him in just a few hours. Last time I posted I said he got another collasped lung and developed pneuomia.... literally 30 mins later they tell me his blood culture came back (they said it would take days but it already started to grow something 12 hours later!) he has a blood infection I can't remeber what it's called it sounds like cockeye haha.. no but really some of these medical terms are so funny.
His lung and blood infection looks like it will take a couple weeks to fully clear up. The other thing that came up the next morning when I came in honeslty pissed me off.. The damn night nurse, who I can't go without saying seemed a little off I don't know why, she was nice enough but just I felt something was amiss with her. Turns out the lady just left Fox basically all night on his right side...because he was sleeping so well.. ugh he always sleeps but he wont even really wake up if you just move him to turn him. But you HAVE to turn them if they have infectious fluid in their lungs because their lungs are sticky and if compressed for too long they collapse... So YES the stupid nurse gave my son a right lung collaspe. As if he didn't have enough on his plate. BUT wait I'm not finished I still have a little more rant left... The pharmacy messed up big time.. now I say big time because a mess up like that could of killed him.. luckily he was okay. They filled the doctors order for one of the antibiotics filled it with the WRONG antibiotic and labled it WRONG so it was labled as if it was the proper antibiotic. The nurse checked it.. it said what is was suppose to be and she gave it to them. Hours later they figure out it was the wrong medicine. THANK GOD it was just an antibiotic.. but still what if he was allergic to it? A women came in and explained the whole thing to me and told me there was going to be an investigation on the women who did it and how it happed and that she is on probation for now. This freaked me out!.. as she was telling me this my son was getting a blood transfusion and I made her check to make sure it was the right blood.. esp since he is 0-, She assured me it was a one in a million chance that this happend and that they will bring with inccident up at the safety meeting this week. That didn't make me feel better.
He isn't tollerating his feeds as well as he is .. but on this one I feel like they are overacting a bit I think he has an upset tummy. Other than that big news!!! they took him off the ventilator about an hour ago but we still have to wait 4 hours til they feed him he hasnt eaten since 12pm he must be starved! poor man. But they just want to make sure that he doesn't have to be re-intubated. As of when they kicked me out of the room he was under that cube box oxygen thing. I hope when they let us back in in 15 mins his still is doing good.. I get so nervous.
So that's most of the Fox updates.
I really enjoyed seen my family this weekend but it kills me when they are gone. I honestly feel like I can't handle this much more. I asked today about getting Fox transferred to CHEO but that seems to be a no go.. but I'll keep bugging.
Tripp and Everly-Rose need their mommy too... :( I feel like I'm choosing Fox over them sometimes, but I don't have choice he needs me more now then ever... and I just hope that the kids will understand that. And as Everly-Rose and Tripp go up and we talk about this time I hope they never feel like I left them. I hope they realize I want to be with them so badly. Every night I think about ways I could make it work better for everyone, but I just can't come up with one.
I also hope my husband realizes what a great dad he is and how much he is doing for this family and that me and Fox miss him.
5 more days til I see them again:(
Saturday, December 10, 2011
Steps back
Well.. I wish I was able to give a good update... but as quickly as things got better then turned for the worse again..
fox came off the ventilator on sunday morning and was doing well... Monday night he was doing well enough to come out of critical care. It was amazing I had tears of joy when I saw him in his private room and I was able to be with him 24/7 I felt like I "normal" Mommy. I felt like I was taking care of him for the first time. Then on Weds I noticed something wasn't right he was working really hard to breathe. It was retracting each breathe under his ribs, he looked pale. He was desating into the 70's and back up into the high 80's they put him on more oxygen and thought that fixed it but my Mommy instincts were so strong. This wasn't my baby's norm he was struggling why couldn't they see what I saw?
fast forward after dinner time and Doctors coming to check on him because he was starting to turn blue... everything went kinda fast after that. They bagged him and started breathing for him they did an xray and it showed his left lung collapsed. That was it he was rushed back to critical care. My poor man... the whole time down he held on tight to me finger.
Fast forward to today.... I'll skip over somethings because it would take me to long to explain everything and I need to get back in to see Fox.
He has pneuomia and asperated his feed into his lungs he has another infection in his lungs as well and as of this morning his other lung collasped as in lower left lope. His echo he had yestday shows some problems with the pulomary arteries and they are going to wait a couple days to see how he does.. if they is no change he might have to have more surgery.
On top of all of this his newborn screening came back positive for Cystic Fibrosis.. with a 2.5% chance of actually having it.. this has nothing to do with his heart.. but seriously how unlucky health wise can he be? They want to rule it out because he did end up back on a ventilator but the doctors still don't think he actually has it. I have come to terms with the fact that I can't control his health .. I can't make him better... BUT I can and will make sure he gets the best help and treatment that he can get. Our whole family will be there every step of the way for him and I want to make every day and every momment count for this little man. I love him so much and I can't wait for the day I will get to take him home.
fox came off the ventilator on sunday morning and was doing well... Monday night he was doing well enough to come out of critical care. It was amazing I had tears of joy when I saw him in his private room and I was able to be with him 24/7 I felt like I "normal" Mommy. I felt like I was taking care of him for the first time. Then on Weds I noticed something wasn't right he was working really hard to breathe. It was retracting each breathe under his ribs, he looked pale. He was desating into the 70's and back up into the high 80's they put him on more oxygen and thought that fixed it but my Mommy instincts were so strong. This wasn't my baby's norm he was struggling why couldn't they see what I saw?
fast forward after dinner time and Doctors coming to check on him because he was starting to turn blue... everything went kinda fast after that. They bagged him and started breathing for him they did an xray and it showed his left lung collapsed. That was it he was rushed back to critical care. My poor man... the whole time down he held on tight to me finger.
Fast forward to today.... I'll skip over somethings because it would take me to long to explain everything and I need to get back in to see Fox.
He has pneuomia and asperated his feed into his lungs he has another infection in his lungs as well and as of this morning his other lung collasped as in lower left lope. His echo he had yestday shows some problems with the pulomary arteries and they are going to wait a couple days to see how he does.. if they is no change he might have to have more surgery.
On top of all of this his newborn screening came back positive for Cystic Fibrosis.. with a 2.5% chance of actually having it.. this has nothing to do with his heart.. but seriously how unlucky health wise can he be? They want to rule it out because he did end up back on a ventilator but the doctors still don't think he actually has it. I have come to terms with the fact that I can't control his health .. I can't make him better... BUT I can and will make sure he gets the best help and treatment that he can get. Our whole family will be there every step of the way for him and I want to make every day and every momment count for this little man. I love him so much and I can't wait for the day I will get to take him home.
Saturday, December 3, 2011
day 11 post op
I first just want to say that Fox is doing well.. despite the complication he has had and the new ones he is faced with he is such a fighter. Sometimes I think.. when will he catch a break?! but then I look and him and see how strong he is and it doesn't even seem to phase him.
So... he still has his drainage tubes in his chest which is apparently a long time to still have them in .. but he did have a delayed chest closer so it didn't seem that odd to me. Well one of his tubes drainage color started to change kinda milky color so they sent it off to the lab and it turns out he has chylothorax. I'm not expecting anyone to know what this is.. but I'm not going to go into too much detail explaining it... Dr. Google can tell you more if you like:)
Basically it is a complication from surgery. During the surgery his thorax was nicked and now when he gets feeds ( his are still from a tube going in to his belly ) the fats or lipids leak out into the space where they shouldn't be... this of course is not good. Surgery might need to be preformed to fix it or if its small it can heal on its own.. he will go on a special low fat formula that is more like just medicine then a true feed but has the same amount of calories. This does usually mean a prolonged stay in hospital. Ugh really? like really? I feel so bad for him and then I look at him and he looks back and it's like he's tell me "Mom I'll be fine don't worry it's nothing, I've been through worse" He is perfect.
On a extremely happy note.... I got to hold him yesterday! it was one of the best feelings in my life he slept in my arms for 2 hours!!! he knew I was his mom and trusted me even after everything he has gone through I know he feels loved and that is so comforting to know.
And to top it off Brandon and the kids and Grandma are coming down today I'm so over the moon with excitement to see my other loves!
Despite the doctors choosing to leave him on the ventilator for a couple more days this will be an awesome day:)
So... he still has his drainage tubes in his chest which is apparently a long time to still have them in .. but he did have a delayed chest closer so it didn't seem that odd to me. Well one of his tubes drainage color started to change kinda milky color so they sent it off to the lab and it turns out he has chylothorax. I'm not expecting anyone to know what this is.. but I'm not going to go into too much detail explaining it... Dr. Google can tell you more if you like:)
Basically it is a complication from surgery. During the surgery his thorax was nicked and now when he gets feeds ( his are still from a tube going in to his belly ) the fats or lipids leak out into the space where they shouldn't be... this of course is not good. Surgery might need to be preformed to fix it or if its small it can heal on its own.. he will go on a special low fat formula that is more like just medicine then a true feed but has the same amount of calories. This does usually mean a prolonged stay in hospital. Ugh really? like really? I feel so bad for him and then I look at him and he looks back and it's like he's tell me "Mom I'll be fine don't worry it's nothing, I've been through worse" He is perfect.
On a extremely happy note.... I got to hold him yesterday! it was one of the best feelings in my life he slept in my arms for 2 hours!!! he knew I was his mom and trusted me even after everything he has gone through I know he feels loved and that is so comforting to know.
And to top it off Brandon and the kids and Grandma are coming down today I'm so over the moon with excitement to see my other loves!
Despite the doctors choosing to leave him on the ventilator for a couple more days this will be an awesome day:)
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