We did make it home on Sunday!! It was a good day. :)
Sunday night Julianne promptly spiked another 101.5 fever. :/ She was also coughing like crazy and had a runny nose. When I called the doctor they agreed that it was probably a respiratory virus and to just watch her for now. Well, she's been coughing day and night for the last 3 days, but today she seems a lot better! There wasn't any coughing this morning. Maybe she's turned a corner.
Yesterday we had a follow-up appointment with G.I. This was with the new G.I. to whom the hospital referred Julianne. So far so good...I like him. When we first met him he stressed me out, but I appreciate that he's thorough. Julianne is doing SURPRISINGLY well with this cough! By "surprisingly well" I mean she's coughing all day, which sometimes turns to gagging, but hasn't been doing any retching and that's a BIG improvement from past colds. I'm so grateful for that because we've been able to get all of her feedings into her.
Julianne has been having a lot of anxiety issues and that's made Kent and I pretty sad for her. She hates to take a bath, take her shirt off, and really just about anything that involves holding a leg or an arm. My other "heart friends" have said their kids experienced the same/similar things after the Fontan. We'll have to just wait it out I guess. Every now and then she'll look around and say, "No ladies (nurses), no IV's...just Julianne and Mommy". We keep reminding her that no one is going to hurt her at home. No IV's, no blood (labs), no ladies...just daddy, mommy and Julianne. She seems to relax a little when we tell her that. Her bath was definitely something we're going to avoid for a little while though. It was THAT bad!
I think now she just needs to recover...mentally from all she's been through and physically from this new respiratory virus. Things are steadily heading back to "normal". Life is good and we are so thankful!! We are so happy to be home with Julianne and are enjoying everyday! Thank you so much for your prayers and I promise to have new pictures soon. :)
6 comments:
So glad you made it home. I got online just to check. Be interested to talk sometime abt the GI. I'm not so inspired, tho I was also hopeful at first. Haven't yet made up my mind whether to go back to him, to give him a second chance. Enjoy being home with the waning cough!
So glad you are home. My prayers for you is that you get to stay home for a long time and get back to normality . Julianne is sooo precious and brave!!!
Glad you're home again! Praying Julianne continues to get well from her cough and that you three can stay at home for a good long time!
Not sure if you've heard of the new ABC show, Boston Med, but tonight's episode is at Children's Hospital in Boston & one of the cases is a kid w/ HLHS! Not sure if you'd be up for it or not since you were just there (obviously not for Julianne to watch!) but I immediately thought of you when I heard about it from another heart friend earlier today!
So, so happy for y'all to be back home with your sweet girl! Oh my heart just breaks at all emotionally and mentally that she is going through. She's such a smart girl. We'll be praying specifically for that now, too.
We've had a cough virus thing going around here, too. Both Wyatt and Luke got it and now I've started with it. I hope she stays clear of anything else like it!
Looking forward to more pictures!
Love to you~ Rebecca
I am glad that you are happy with the new GI doctor!!
I feel bad that Julianne has to carry those fears of doctors and nurses etc... if she only knew how good they have been to her. I can certainly understand it though. She is so young to have those fears already. I will pray for her peace and that she will be refreshed in the company of Mommie and Daddy and family around her.
Boston Med show was such a reminder of what a miracle God has performed through the doctors and nurses.
Love you all!
HAPPY FOURTH OF JULY!!
GOD BLESS OUR NATION AND TROOPS SERVING OUR COUNTRY FOR THE FREEDOMS THAT WE ENJOY!!
AUNT\GREAT SUZA
Hoping all is good with Julianne.
Miss hearing from you all.
Jan Tompkins
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