He's eating and resting peacefully...
and then he starts crying and is just so upset.(and this was a very mild upset with no flailing arms)
It's getting really hard to sit here and watch my baby scream. I think it is worse that there is no sound that accompanies it. For the last two days he has been crying on and off for a good portion of the day. And this is the lip quivering, big gulps of air crying that makes him look terribly distraught. The doctors said everything looks good, his blood gases are okay, so they think he might be having "withdrawal" issues from having his sedatives decreased. They didn't wean any more today to "give him a break".
He received more blood today, although I'm not sure why. He just had a blood transfusion a few days ago and they are only doing labs once a day now so I was surprised he needed more blood already. At least this time the IV is in his hand and not messing up the other foot. I will have to pay more attention next time because I should have noticed his little foot tilted at the wrong angle and made someone fix it. The pressure is up a bit on the vent, but all other settings are the same. I guess we're starting to see the effects of discontinued steroids, though his O2 is in the 50s, which is great for him. He's still on scheduled doses of albuterol, full feeds and they are starting an oral steroid to see what that does for him. Yesterday they were able to suction a huge amount of what I will call gunk from his lungs. Hopefully the diuretics, albuterol and tummy time are helping to loosen some of the nasty stuff that is hindering his breathing.
He received more blood today, although I'm not sure why. He just had a blood transfusion a few days ago and they are only doing labs once a day now so I was surprised he needed more blood already. At least this time the IV is in his hand and not messing up the other foot. I will have to pay more attention next time because I should have noticed his little foot tilted at the wrong angle and made someone fix it. The pressure is up a bit on the vent, but all other settings are the same. I guess we're starting to see the effects of discontinued steroids, though his O2 is in the 50s, which is great for him. He's still on scheduled doses of albuterol, full feeds and they are starting an oral steroid to see what that does for him. Yesterday they were able to suction a huge amount of what I will call gunk from his lungs. Hopefully the diuretics, albuterol and tummy time are helping to loosen some of the nasty stuff that is hindering his breathing.
3 comments:
Poor baby - I know it is so hard to not be able to just pick him up and console him. Your motherly insticts are so hard to subdue at times like that. He is just so cute! We love the updates and check for them periodically throughout the day. Thank you for allowing us to share in Rhys' journey. Our thoughts and prayers remain with you always. Hope to visit soon! Crystal
I'm so proud of you, little Rhys. Keep fighting hard and know that you've won the hearts of so many people!! Someday, you and Olivia and can trade stories.
Hang in there. It is VERY difficult to see your baby crying but with no sound. It is equally as difficult to know you can't just pick your sweet little boy up and make it all better. I hated those times. Mommies are supposed to make it all better for their kids. I'm praying for you. Rhys is such a strong little fighter.
Julie
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