And heres Bryce..... Oh thats not Bryce, thats his lunatic grandfather! He dressed up for Faythes Halloween Party... Too funny! 
Look at his coloring, BLUE! This is another issue that we are dealing with.His entire body turns this color from time to time and we aren't sure why.
The pic doesn't do it any justice, it was so bright blue I was in shock!
This is what he does with his cannula, he looks like a snake! Update on my last post:
I did end up calling pedi (not at 2am) and they said we needed to come in right away that the hair loss sounded too extreme. They agreed when I got there that he had lost way too much hair in one day.... They thought maybe thyroid, so they took blood. Not his thyroid, which was good news. They basically determined that it is hair loss due to Post Traumatic Stress. Which probably occured from when he ended up in the PICU. SO thats that all is well now, hair has finally stopped falling out.
Anyway as of today Bryce is 11lbs 5oz.!
We start Synagis next week.
We did end up in the hospital again Sunday for breathing again. We were basically told to get familiar with the hospital because it seems like it will be one of those winters.... Hopefully not!
Also pulm. says we will not wean his O2 AT ALL until the summer. This is pretty crappy, but if it helps him then thats all I can ask.
OT came today and they are thinking we need to see ENT now due to Bryce snoring like a chainsaw, and when he drinks his bottle he always sounds SUPER congested even though he's not. OT is thinking maybe some sort of irritation or collapse somewhere in his throat, possibly why he doesn't sleep well. So he wrote a note to Bryce's pedi suggesting a visit with an ENT to rule anything out. I wonder how many different kinds of specialists we will see this year???
Also our last hospital stay has prompted us to have to see a Cardiologist again. Hopefully we can get all this stuff straight and get Bryce to where he can finally feel good for once! This poor kid has been through so much and sometimes I hesitate to call a doc with a concern because I worry that they're going to send us for painful tests or back to the hospital. I feel so bad for him and there is nothing I can do about it.
Example this last admission, we were in the ER and they were thinking he was going to have to go back to ICU and of course they HAVE to have a line in to go there so they stuck him in every extremity, which made him scream, and during that they blew a vein so severely that he is bruised from finger to above wrist.. and then has blown veins everywhere else. Its not fair. I can understand to a point that they "need" a line but come on, when you see that his veins are blowing so bad that blood is traveling up inside his arm and causing bruising and swelling you should consider if he REALLY Needs it. Then after they FINALLY got a line in they never used it! THEN to make matters worse they put it in his foot and he is so spazy and kicks allot that the next day he kicked the thing out and blood was going everywhere I finally told them to take it out and leave it out! It frustrates me soooooooooo much!
Anyway now Bryce has had diarrhea for the last 2 days and then vomited really bad today..... I don't know whats up with him but I don't like it.
But in happy news he is smiling allot! Some new pics up today!
I did end up calling pedi (not at 2am) and they said we needed to come in right away that the hair loss sounded too extreme. They agreed when I got there that he had lost way too much hair in one day.... They thought maybe thyroid, so they took blood. Not his thyroid, which was good news. They basically determined that it is hair loss due to Post Traumatic Stress. Which probably occured from when he ended up in the PICU. SO thats that all is well now, hair has finally stopped falling out.
Anyway as of today Bryce is 11lbs 5oz.!
We start Synagis next week.
We did end up in the hospital again Sunday for breathing again. We were basically told to get familiar with the hospital because it seems like it will be one of those winters.... Hopefully not!
Also pulm. says we will not wean his O2 AT ALL until the summer. This is pretty crappy, but if it helps him then thats all I can ask.
OT came today and they are thinking we need to see ENT now due to Bryce snoring like a chainsaw, and when he drinks his bottle he always sounds SUPER congested even though he's not. OT is thinking maybe some sort of irritation or collapse somewhere in his throat, possibly why he doesn't sleep well. So he wrote a note to Bryce's pedi suggesting a visit with an ENT to rule anything out. I wonder how many different kinds of specialists we will see this year???
Also our last hospital stay has prompted us to have to see a Cardiologist again. Hopefully we can get all this stuff straight and get Bryce to where he can finally feel good for once! This poor kid has been through so much and sometimes I hesitate to call a doc with a concern because I worry that they're going to send us for painful tests or back to the hospital. I feel so bad for him and there is nothing I can do about it.
Example this last admission, we were in the ER and they were thinking he was going to have to go back to ICU and of course they HAVE to have a line in to go there so they stuck him in every extremity, which made him scream, and during that they blew a vein so severely that he is bruised from finger to above wrist.. and then has blown veins everywhere else. Its not fair. I can understand to a point that they "need" a line but come on, when you see that his veins are blowing so bad that blood is traveling up inside his arm and causing bruising and swelling you should consider if he REALLY Needs it. Then after they FINALLY got a line in they never used it! THEN to make matters worse they put it in his foot and he is so spazy and kicks allot that the next day he kicked the thing out and blood was going everywhere I finally told them to take it out and leave it out! It frustrates me soooooooooo much!
Anyway now Bryce has had diarrhea for the last 2 days and then vomited really bad today..... I don't know whats up with him but I don't like it.
But in happy news he is smiling allot! Some new pics up today!
6 comments:
He is getting so big. I know that it has been a long road. You are such a trooper and I know that you will get though this. I have been copying your posts so that Gram has a copy. I always tell her how cute the pictures are and that I admire you for all you have been through. Keep your chin up and always remember to smile.
Sandie
Hey Erika, I hope things get better for you soon He is a cutie, and I will be praying for you and your family. Hang in there you are doing great.
An old Friend!!!!
Thanks Old friend for checking in on us. I'm not sure who you are but its nice to know that I do have support even from people who I haven't seen/spoken with in a long time. Maybe someday we won't be old friends anymore and could be new friends again.
Erika
Hey there. I hope Bryce is feeling better soon. Does he turn blue when you take his O2 off? I see he isn't wearing his cannula in that pic. I keep Edwin's O2 on even during bath time. Just a thought.
We see an amazing ENT in Boston, highly recommended by our pulmonologist (who is also your pulmonologist.) If you want his name let me know. He deals with Serena's airway issues and is one of the best in the entire world. let me know!
He is soo cute and getting so BIG!!!!
Hi,
In this pic he does have his cannula off because we had just gotten home from the hospital, so I always change it after a hospital stay and get him in the tub quick just to be sure the germies are gone, so I am sure that didn't help on this one. But he does do it even when on O2 and that is what ended up getting him admitted into PICU the last time because he did that 2x in the ER with his O2 at 500 cc's. I try not to take his O2 off that often, but sometimes I do for a quick tubby. I wonder if I should call our Pulm. for the referrall to ENT instead of pedi?? I am starting to think that all this stuff should be brought to pulm attention rather than pedi? I think fo rme sometimes its habit to call pedi instead of pulm, because I never dealt with any other docs with my two girls.... I would love the name of who you see, then I can call pulm and ask for them to refer me to that doc. What is it like for you to have to travel to Boston with the kid though? Does it make it allot harder? Thats all I would worry about I guess... But if that doc is the best that where I want to be. Thanks for all your help Stephanie! Talk to you soon!
Me again :) I am the mommy who deals with the ALTEs. I haven't been around lately with your blog but I am happy to see how big he is getting!!!
Ashton is 29 months old and still has blue spells....if you ever have questions let me know.
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