Terrible, Horrible, No Good, Very Bad Day Redux

Thank you all for your supportive and kind comments in response to last night’s post. We are facing some challenging decisions as we proceed with assessing the best options for BabyBug’s future. There is no ideal approach in this situation and not a whole lot of prior cases to rely on – her condition is very difficult and very rare (especially when you factor in the Down syndrome) so it’s not like there is anybody who has seen this exact scenario a few dozen times and knows just what to do and when to do it. We will see what comes of the doctors’ case conferencing.

Last night was not a whole lot better than the day. Because of the swelling in Leah’s throat, she was having a ton of trouble breathing all night and spent most of the wee hours of morning gasping for breath. They did a chest x-ray and the surgeons determined that she had some edema from the IV fluids so they gave her extra Lasix, and they observed that her throat was swollen from the bronchoscopy so they gave a steroid to help open up her airway. She also had a third dose of morphine. Once she was able to breathe a little more comfortably, Leah had a relatively decent day. But toward the evening she got really agitated again and when the nurse went to give her Tylenol we saw that her g-tube was red and a little bit leaky. She has also been having a lot of residuals lately (food left in her tummy at the next feed). The surgeon is going to come by and take a look. In the mean time it’s back to magical mommy tricks in turns to try to keep her calm, if not make her fall asleep. I can hear her getting very raspy. She has had trouble with the tube all day because her secretions are super thick and hard to suction. On the bright side, because her mouth has been so dry (probably why secretions are thick), she is ALL OVER the paci. She even sucked on my gloved finger on and off for like, half an hour. It probably feels good to have something in her mouth that increases the secretions. The down side is that it makes her cough more.

Can you tell it’s been a rough night? And it’s not even midnight!

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LeahBug during her “feeling better” period.

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