Monday was a big day. We had a grandparent shift change, with Mimi and Pa heading back to Texas by way of Bryson City, NC, and Grandma Indiana making the trek down for this next week. We are very thankful for such loving, willing, and helpful "grands!"
Monday was also the follow up with Feiste. He said John looks great and spent some time with me talking about my fears for infections for John. I overreacted by forcing Tony onto Tamiflu and antibiotics. Feiste helped me gain some perspective on how to balance what will make me comfortable in my efforts to protect John and what is irrational and over-the-line. He also removed the big piece of tape covering the stitch on John's chest tube incision. We go back for a pre-weekend check on Friday morning. Mostly to reassure me...
Tuesday was the first followup visit with Cardiologist Malpass. He heard a small friction sound at the apex of John's heart that was not in the discharge report. He decided to go ahead and do an echocardiogram to check for fluid that would indicate a possible infection. No fluid found, so we will go back for another listen and ECG next Tuesday. Malpass will also remove the chest tube stitch that day.
John gets better and "more himself" each day. He is loving having Grandma around, as are Tony and I.
We had a rough night last night (Tuesday night), and I am starting to think about a link between tylenol and a difficulty in John managing his discomfort. Last night before bedtime was the first time he had some tylenol in about a day and a half. He didn't really want it or ask for it, but I talked him into it. He woke up unhappy about 4 hours later. I'm wondering if the tylenol rids him of the pain but makes it more present for him when the medicine wears off.
We also had an early morning this morning. He fell asleep on the futon in his room, and fell off about 5:30am. Only about a foot off the ground and no damage seems to have occurred, but it scared the bejesus out of me and I couldn't let John go back to sleep, because I kept grilling him to make sure he was ok. Worst parent ever, right here.
Tony and Grandma were the strong team this morning, while I slept in. I'm exhausted again now and glad it's bedtime again.
Twohy still seems fine and occasionally kicks up a storm. I'm glad he's with us.
Net Zero
1 day ago
10 comments:
Glad to hear that the checkups look good!
And you are doing exactly what you should -- being protective and cautious and watchful and analytical -- you're the parent, someone's got to monitor things, especially for a kid that's just been thru heart surgery! and sounds like Malpass is doing the same (hears a little something, and double-checks it, just to be safe)
and the roll off the futon is FAR from a bad parenting move...heck, the sleep he got by falling asleep there and not waking from being moved is probably more important than the surprise landing -- it's obviously bigger to you b/c of your heightened level of protection at this moment, but no need to give it a second thought.
keep up the good work...john's still healing and recovering and adjusting, so makes perfect sense that there are still ups and downs -- hang in there!
Thanks! It's so great to have a sister who's a mom too.
Thanks for sharing John's story! My son Caleb will be having open heart surgery on Monday at MUSC. Caleb has a PAPVR and an ASD. What you wrote was very helpful in letting me know what to expect! Caleb is also a patient of Dr. Malpass. I am so so so glad you shared this! I will be praying for you and your family! Caleb also has a site with his brother Mason if you would like to take a look. I will also be updating on Monday as things get going.
MichelleGilliam
www.caringbridge.org/visit/masongilliam
So glad to hear that he's recovering well and that the tests are coming back normal. We're praying for you guys every night. I agree with Jenny - keep up the good work!
We are so happy and thankful that Grandma Indiana was able to come. You all are doing a fine job. Trust your instincts, and just write it off if you go overboard occasionally. No guilt! Hope you can catch up on your rest - Twoey needs it too! Two. ...
Oh, him falling off would have scared me too! You are so much stronger than I would be int he same situation. I would have just been crying. And then more crying. And then some more crying. :-)
Fantastic that the check-ups are going well.
I can't imagine what a scary time this is, and yet the great hope you must have that all your fears are unfounded.
I will continue to lift John in prayer.
Take care, Carley
I'm a bit surprised John didn't fall himself out of bed a few more times, just for the fun of it. I guess he was too sleepy to realize he had discovered a new adventure...
He's fallen off the bed one other time, when we were out of town staying at a hotel... and of course that bed was about 3 feet off the ground!
I think it's mostly disorienting for him. He goes right back to sleep (if I leave him alone!)
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