Well...another absence from me...yes, you guessed it, my little guy was in hospital again...when I started my blog i had intention of finding someone else out there in the word who had a condition the same as my son's.... his official title is.....acute life threatening spasmodic croup...basically his upper airways, his voice box area, close over very quickly, within a few seconds sometimes...at any point in a cold or virus....many of you probaby have had one of your children or friends chidren have croup...the difference is that Jacob's airways can close within a few seconds and that he is now 9 and it is still happening and on such a regular basis...this is where I need your help. Because it is so rare, in fact his specialist doesn't really know of any one ever, anywhere having it as accutely at such an old age...I would love to hear if any one of you know anything about anyone with this illness...
I am really going quite insane because the treatment is to watch him 24 hours a day...its tiring and emotionaly draining. and now he looks at me and asks me is he going to die...it breaks my heart to think on such a regular basis he tinks he will die...I would like to know if there is some hope for him, that there may be a cure, a fix, or something out there that can help him and me!!!
I need to talk to someone too...just to vent and know that someone understands...
I carry with me everywhere an emergency bag with loads of drugs and oxygen tank...its blooming heavy and so ugy...but we affectionately call it our e bag!!!lol...
We have not been on a holiday, when we go places it can't be when he is sick, and because he has a crappy immunity, he is sick quite often....we have been on a coupe of few day trips to the beach when he has been well. so i shouldn't complain too mush...lol...we need to know that if we go anywhere there needs to be an amdulance very close!!!!but I still take him to the city for adventures....so we try not to make him m iss out too much...
He is homeschooled because of his condition and when his twin goes to regular school and he is desperate to go too...well...it makes life tough!!!
This video is of him after he has been given his nebulised adrenolin and he is in hospital still having difficulty, but the emergency is over...the other is of his e bag....
so please...if anyone can hep me. i think you would have no idea how much i would appreciate it...
also the beautiful kristin at
TWINKLE TWINKLE
until next time...
lots of it
mandy
27 comments:
Mandy that is a heartbreaking cough. that sound sent shivers up my spine i reconise it from when my brother was itty bitty, but im of no use for any help. just wanted to pass on some hugs cause thats the only thing i have to offer.
Oh Mandy, I wish I could help you and your little boy, I can't imagine how hard it would be for you and him too for that matter. You are so strong and he is so lucky to have you for his mum. Take care of you and your little boy and if there is anything I can do please, please, let me know. Love Ness xx
Oh Mandy, I'm so sorry you have to go through this. I wish I could help, but I don't know anyone who lives with this. I'm always here if you wanna email and rant though. xo
I'm drying my eyes right now...
I will be praying because that's the only thing I know to do.
My husband works at the Houston Medical Center in Texas, they have cutting tech. going on all the time. I will find out if they are doing anything on what your son has and get back with you. I can not promise any thing but will look into it.
Just know you are getting a great big blog hug right now.
(A BIG HUG).
I wish I knew how to help. The only thing I can do, like Rayanne is pray. Whenever you get a chance dro by my blog. I was thinking of you while writing this post.
xoxoxEsther
I don't even know what to say.
I have been in the position with Kendra (she has allergies and asthma and has had her share of hospital visits) where I could see that she was not breathing and that she knew that I knew what was happening, but we could not do anything about it. BUT I realize that I am a wreck when it comes to those situations and that thank God Dave was around for the worst of them. But to feel the way I did for 10 minutes day in and day out? You must go crazy. I am so sorry I can't even express how much. I am so sorry to see both of you (and your family) hurt, and you must understandably be exhausted.
I have a wonderful doctor for Kendra. I will print out this entry and ask her if she knows about it. I will see her this Thursday, so I will let you know what she says.
I will do anything I can to help!
Oh! I will also link to your post and suggest that others do the same - to get the word out? Maybe then we will find more people? Is that okay with you? If so, I will post it with your link.
Love love love Me xoxoxox
I can't get the video to play right now, but are they treating it like asthma? Is he on any daily preventative/maintenance meds? My daughter has asthma (which I'm still learning a lot about) and the maintenance meds help reduce the # of asthma episodes she has. I assume you've seen a pulmonologist? Spasmadic croup is commonly known as cough variant asthma. I know that National Jewish is the top respiratory hospital in the nation. Perhaps you can look into going there? I realize what your son has is likely more serious than cough variant asthma since my understanding is it's CVA isn't life threatening.
A follow up to my previous comment; I was mistaken and CVA can be life-threatening. I also want to give you link for http://www.nationaljewish.org/
I sure hope you can get a better treatment plan for your son to improve the quality of life that you all have. Hugs!
Visiting from my Mom's blog (Rayanne)...my crew is praying for your little man, and for you dear Momma, as well as your whole family. We put the word out for info on our facebook. I saw the comment you left on my mom's post, and I'm overjoyed that your hope is rising...that is HUGE! Praying with great expectation, Amy
Mandy - I'm new to your blog, but a friend sent me a link and asked me to help. I think you and I are in the exact same boat. My nine year old son, Julian, has severe spasmodic croup. Once Julian was in the hospital, on oxygen, fighting for his life. For an entire night he got racemic epinephrine breathing treatments every 20 minutes. I don't even want to think about how scary that much epinephrine is, but it was that or intubate him and they said they didn't want to do that because they were pretty sure they wouldn't be able to ever get him off the breathing tube (because the tube itself causes swelling). So I know how scary croup can be.
I watched about two seconds of your video. Your son sounds exactly like my son, and I couldn't bear to hear that cough any longer (you know the feeling I'm sure). We've been to some of the best doctors in the country and had every diagnostic test remotely related to croup. And we've figured some things out. I will help you in any way I possibly can and I totally understand what you are going through. Is there an email address to write to you at?
hi lauri...don't know how to get in touch...
maybe you might check back here
mamdaray@bigpond.com
Hi Mandy! I guess that would have been helpful info to have wouldn't it? LOL! I'm on the phone arguing with a pharmacy (Grrrrr!) but will write to you later! :)
Hi, Mandy. I know how heartbreaking, terrifying and exhausting this must be for you. You are on my heart and in my prayers. I think of you often. I will do a post at some point soon on my blogs and on my Facebook to help get the word out.
I did a silly little video on my recent post on my art blog along with an update on my progress with the projects. I'll leave you the link below in case you want to come and see it and hear my voice. I know that you probably aren't able to spend time doing the projects right now because of your extenuating circumstances (family must come first), but I still consider you an important member of our group whether you can do them or not. You have been a source of encouragement to me and are such a delightful person. I find it a privilege to be your blogging friend. Luv ya.
http://artisticcreationswithtrudy.blogspot.com/2010/09/artistic-mother-video.html
I don't know anyone else dealing with this who I could put you in touch with. But I really so wish that I did. I cannot imagine the heartbreak. That is a hard burden for any mama to have, and I so hope that you find someone who can help you and your little guy to recover.
I wish I could help but I'm glad to see you found Lauri. Hopefully good things will come from the new connection. Take care.
My heart goes out to you and your family Mandy. I hope help will come to you soon in some way or another.
Thinking of you.
Loads of hugs.
M xox
Hello! Hey Thanks for stopping by my blog!!! I love comments! I hope you come back more often!!!
BTW...praying for you!
just wanted to pass on some online hugs and positive vibes for you and your son..what an awful thing to cope with and I am hoping that you find someone to help you with this who is in the same situation
Just checking up - I am so excited to see so much activity here - hope you got the chance to speak with Lauri and that you can bring each other some peace :) xoxox
Mandy - I wish I knew how to help. He's lucky to have you. Though I'm familiar with this particular illness, my daughter was ill and in the hospital for some time last year, (and has since recovered), so I know how heartwreching it is to watch your child suffer. You'll be in my prayers, and thanks for stopping by my blog.
Sorry - I meant to say I'm not familiar with this illness.
Mandy,
I do not know of anyone with this illness, but as a mother myself, I feel your pain to get the message out there to try anything. Have you considered at FaceBook account? It might be an option to open, link the video and a call for help. I could then post on my FaceBook and slowly but surely you might make some headway. I have more contacts on Facebook than I do on my blog. Just a thought. My thoughts and prayers for your entire family. Hugs!
I feel so sorry for you all, I cannot even imagine what you're going through. I did some Googling just to understand what this illness is, now I know a little bit better. Can't find much except that maybe allergies trigger this situation ? O well, you probably know this too and I am not helping at all. My thoughts are with you, hope you can find some help soon.
Just checking in on you and your Jacob. Still praying for you both. Gentle hugs, Amy
Hi there!
Anything new? I hope you are all happy and well! xoxox
i'm so sorry to hear about your son's rare condition. i do hope you find someone who can help out, or at least someone with more information. you and your son and your family are in my thoughts and prayers! sending big hugs your way.
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