Frost says "When there is like a ball and Wren is over at the chair and he crawls to it then he starts going like this 'hah a hah a hah a hah a'. He starts like panting."
I have noticed this but I didn't really notice. Now I am worried. Wren is obviously vigorous and happy but he does pant and get out of breath when he has been busy moving about a lot as he is these-days. I think this is our first clinical sign of Wren's heart condition.
I called the cardiac clinic nurse's line just to check that its okay to wait till our next December appointment and Ashley is going to call me back. Really, I think he is okay but as she said "cardiac kids have to self-limit". By this she meant that when they get out of breath they may have to stop and take a break and exercise within the limits of their condition.
I feel a bit sad. We know that Wren is not cured but its been easy to forget the perils of his anatomy when he has behaved so normally in most every way. I don't like to think of him puffing from the grand exertion of crawling across the room.
Follow-Up
Dr Lewin said he thinks we are seeing this because Wren is getting more active. He feels it would be okay to wait until December unless we see him getting more fatigued or panting more or feel anxious. Then he would be happy to see Wren. I feel better now and reckon it is just because of his left-ventricle having to work harder than normal. I know that's not good but its not something new.
3 comments:
Hey Shannon,
I haven't been here in a while...is Wren not sleeping through the night? Is he still waking to nurse?
Last time I read your blog I thought he was doing alot better, what happened? I just read that you were putting him down at 6:45-7pm....can you delay it a bit and get him to go through the night? What's his nap schedule? Do you think he's just simply used to it now?
Sorry I have so many questions...I admit I'm in shock.
Sorry to see you were a bit worried about his panting. I know it must have been nice to push his condition to the back of your mind for a bit.
Hope all is well!
Heather! Long time no type...
Wren has been an absolute bugger with his sleep for the past age. He was improving but in the end I did sleep training and while it enabled him to go to sleep on his own it did not eliminate night wakings.
We are actually doing very well at the moment (comparatively) since he goes to bed at 7pm, nurses at 2-3am for 10 minutes and wakes at 5.30am for the day. He is only rousing at other times occasionally and doesn't need help going back to sleep. The problem has been early rising. He used to have very very fragmented nights until I put him to bed earlier. For about 6 weeks he was going to bed at 6.30pm and waking at 4.30-5am for the day. Now he goes to bed at 7pm he makes it to at least 5.30am, sometimes 5.45 (oh bliss).
I don't mind the one waking and nursing, its the early wakening that are brutal.
How are you doing? I'd love to catch up.
Shannon
Hi Shannon--
I have to say that this post hits close to home with me. Micah started to pant all the time too when he became more active...now mind you that Micah has right heart issues, but still, he is tiring very quickly and out of breath often as well.
Listen to your gut--if you feel he is getting really tired, bring him in. I do not want to alarm you in any way...but we seem to know best when there is something wrong with our kiddos. It did turn out that Micah needed medications added to help with this, but unfortunately, it just looks like this is a reality of Micah's defect, there is very little that is helping him right now.
I am going to keep you guys in my thoughts and hope that he learns to limit himself...don't count on it though...Micah still keeps going and going and going...the Energizer Bunny! It never ceases to amaze me of how much these heart babies overcome in their lives.
Heart Hugs,
Samantha
www.caringbridge.org/visit/micahmajor
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