As a result, Charlie is on two antibiotics right now and is still on the vent. They are having to keep him sedated because he is very aggravated by the tubes. He starts gagging and retching and then desats. Overall, he seems more comfortable than he was yesterday, but it is still awfully hard to see him like that. We now know the real baby in there and he is just not himself. When he does open his eyes and look around he looks so scared. But hopefully they will feel comfortable taking him off the vent soon - - maybe even tomorrow.
Feedings have of course taken a back seat to this since it started, so we will be back to square one again. We are not sure what the plan of action might be. Dr. Ratner (surgeon) mentioned a few possibilities when he talked to us yesterday including a g-tube or tightening the valve between the stomach and esophagus to keep him from refluxing. We will have to wait and see and hope for the best. We will let you know when we know more!
If there is anyone out there who has experience with episodes such as this - going from completely fine and satting 99-100 with room air to stopping breathing all together with a dip in heart rate for no obviously apparent reason other than being upset (ie: by bath/new feeding tube) - please give us some insight. The doctors don't seem to quite know what to make of it and how to prevent it from happening again. Some answers would make us feel better!
3 comments:
Oh dear Patty! I know how you are feeling, I am here for you anytime!
Juan Pablo did several apnea episodes. He was just fine breathing room air and all of the sudden he turned blue and stopped breathing. That's when they decided to move him into NICU, but remember that he was diagnosed with CDH until he wa 3 months old, this happened as a newborn.
I am praying for Charlie and keeping you in my thoughts.
Fer
Prayers and love are sent your way...hoping
God is holding Charlie in his hands....
Hang in there Patty. I can only IMAGINE how frustrating it is, but Charlie WILL overcome this and be back on track to getting home. We continue to keep Charlie in our prayers, and he is still such an inspiration to the CDH family--you guys should be very proud.
Much love, prayers, and a "hang-in-there-HUG!"
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