It has been about 3 weeks since I took Hudson to the E.R.
At the time I asked the Dr. to give him an antibiotic, but she didn't want to and I was told it would have to run its course. I wish some doctors didn't think they know my son better than me. He doesn't fit the typical mold, and running its course leads me to taking him to his PCP 3 weeks later for antibiotics.
You might think I am making a pot of coffee in the background of this video. No...it's Hudson's breathing....it's the gunk that has turned yellowish/green that is sitting in the back of his throat...I am certain it is the same stuff that has been brewing since we took him to the E.R. 3 weeks ago. He is choking on it, coughing, vomiting......seizures remain off the charts.
He is seizing through the night...early in the morning....it wakes me up, because he cries out....coughs....chokes....
This child endures far behind his capacity....he is a fighter....thank God!
As one can imagine....the only way I can really help my little guy is constant suctioning....sometimes I have to go back with catheter further than I would like to make him cough up the goo that is suffocating him.
He will sound better for a few, and then it build right back up again.
This is right after suctioning....
Between illness and seizures he is so lethargic.
He has been spending his days lying or sitting, but nothing else. I don't have it
in me to do much more with him. I canceled PT yesterday, I stayed home from work today....
one of the gals I work with.....her daughter came down with chicken pox 2 weeks ago....
none of my kids have the vaccine....and she would be there today with her kids...couldn't risk it,
I needed another week for peace of mind.
Praying I see a turn around now that we have Augmentin.....in return, I hope his seizures back off.
We did get the script written by his PCP for the Clobazam (never without a fight).....now I am waiting for the Canadian Pharmacy to call me and get my money so they can send it.....feels like the waiting game is endless!!!
I sure hope it is worth it.....poor Hudson needs some relief!
5 comments:
First, I want to say Hudson is such a cutie!!
Poor buddy, that sounds horrible! Abigail was up in the night last night sounding exactly like that, but was able to cough it out, thankfully!! I held her in a sitting position for about a hour, just patting her back and she was able to cough it out. I know its not always that easy, and I am sorry that (you and) Hudson have to go through this! Praying the augmentin helps quickly!! Lots of love, hugs, and prayers!!
Hope Hudson is feeling better soon!
WOW! That is some very gunky breathing! Poor guy! He must feel miserable! Praying the antibiotic kicks in fast, and that he is breathing much better, very soon! And, GO AWAY SEIZURES!!! Hang in there! Love, Hugs and Prayers!!
Hi there, wanted to introduce myself. I have a 4 year old (as of March) with Mito and seizures too. I stumbled on your blog from a link on Reagan Leigh's site. I blog too and you can find out more about us at www.itsbrowning.blogspot.com
Take care of your sweeties!
Hi Debbie, thanks for stopping by Jacks blog with your kind thoughts. I'm trying to calm down about it wait and see what the final results were...but obviously its hard to hear, he will be just adding more to deal with.
How is Hudson doing? I just don't understand why he has all this gunk all the time?! It's awful. Is this all to do with his low tone and not being able to cough or swallow effectively or does this mean he has a compromised immune system? Would IVIG therapy be beneficial? I know a few mito kids that need it and feel so much better afterwards. I just can't believe you have to deal with that daily, poor kiddo, always needing to be on antibiotics.
I still haven't gotten anything from Dr S or Pam, drives me nuts knowing the EEG was abnormal and they havent said anything to us yet. Maybe he's coming up with a plan. Just wish I knew more now, ugh. Do you normally have to wait several days to hear back?
I think of how tough you guys have had with trying so many meds for H and seeing very little if any improvement. I was on the "askthemitodr" site and so many questions are asked about seizures and Dr S. Answers a lot of them. He replied to one father saying how controlling seizures with mito can be often very difficult...you know that all so well. My heart aches for you and H, knowing he doesn't get any relief. I really admire your strength and faith Debbie, your an amazing mother to H and all your kids.
Thinking about you.
Jack has a cardiology appt on the 19th at children's, just by chance you were going to be there that day. Big hugs and always prayers for H.
Heidi and Jack.
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