Yes, there is a countdown!! We are still a go for discharge on Monday afternoon. Ben’s CT scan and PFT’s will be done Monday morning. They will want to watch him for an hour or two after he comes out of sedation but hopefully after that we can go home!
His cough is still holding so we’re not sure if he has a cold or it’s all the new nebs he’s on. There is some gunk that comes up when he nebs but it could be from the start of a cold. However, some kids develop a permanent cough from Hyper Sal until they are taken off. It’s meant to irritate the lungs to induce coughing but for some it may be too much. I’ll be discussing the possibility of discontinuing the Hyper Sal with our Pulmonologist to see if that helps clear it up. If so, we may go home on Pulmozyme versus the Hyper Sal. He has no fever and is on antibiotics so our doctors aren’t too worried about it. We’ll just have to wait and see.
I just had to pass on a tip for all the other CF mom’s out there. My aunt and cousins sent Ben a portable desk in the mail (that they beautifully decorated) and it has been fabulous!! I am able to put it on Ben’s lap during his nebs or vesting and he is able to run his trains on a smooth surface. Thank you to the Mike York’s!!
Don’t you just love those chunky thighs??!
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im so jealous you guys do pfts over there for kids their age!
ReplyDeleteIs Ben on the 7% Hypersal? If so you may want to try the 4% that you can get compounded from the foundation care pharmacy. My Ben uses that twice a day and has not had any issues with the coughing fits. So happy you get to go home today! ~Kati
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Oh bless you, Margaux! We were only in the hospital for a weekend, I can't imagine trying to entertain and keep your little boy happy for over 2 weeks. You're amazing! Your Ben is beautiful. Thank you for friending me on facebook so I could find your blog and keep up with your sweet family. Lots of love.
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