Wednesday, August 18, 2010
Day 16 - 1
Well he threw up 4 more times last night. This formula just does not agree with him at all. He was just miserable. And he (and I) have hardly gotten any sleep between the throwing up and them coming in to give him breathing treatments, do x-rays, the machines beeping because medicine ran out, etc. How is he going to get better if he can't eat and can't sleep? I feel like I'm completely letting him down. He looks at me as if to say help me mommy and there I stand rubbing his head, not making anything better.
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I can't imagine how frustrating this must be for you both. Is there no other formula they can try? Anything they can give him to help his tummy calm down? I'm sure coming off the pain medication is also causing his whole body to be thrown off as well. Maybe in another day or two when that is weaned off a bit more, he'll start to feel better.
ReplyDeleteIs there any chance you could start him on solids in the hospital to help get his eating on track, or are they concerned only with getting him to drink the formula as his primary source of eating? Perhaps something like an applesauce will help get his tummy filled a little and maybe settled a bit to accept the formula. It's a vicious circle - if they don't feel good, they don't eat. If they don't eat, they don't feel good.
Hang in there, Jamie. I think you have to push the hospital staff a bit more for some potential solutions. Surely he can't have been the only baby in there to have had this problem. You are doing all you can. Maybe time is what he needs right now for his body to just settle down. And if you can find a way to get him a quiet zone for sleeping, that would be even better. Any chance they'd let you have an MP3 player or something beside him with some loud white noise that might help cancel out some of the sounds of hospital life?
I'm thinking of you and praying for some answers for you both.
Tabitha
Thanks, Tabitha :)
ReplyDeleteThe formula they had him on is the only one he can have while he still has chylothorax. All other formulas would have too high of a fat content. They've been giving him gas drops and Zantec, but even those don't seem to be helping.
I have been pushing them for a solution because obviously we can't go on this way. Yesterday, the surgeon told me they would discuss it and let me know at rounds this morning. They have decided to put him on Octreotide to hopefully help stop the drainage. If that doesn't work, he will have to have some sort of surgery under general anesthesia, so I'm keeping everything crossed that it doesn't come to that.
I had asked about feeding him some solids and they said no, other than a bit of yogurt (fat-free) because he has had antibiotics. But that is a moot point now because while he's on the Octreotide, he will be back on TPN and no food by mouth.
We do have a music player for him, thank goodness. He was used to going to sleep to music at home, so it calms him down and helps him to go to sleep. But last night was just bad because he didn't feel well at all, so had a hard time sleeping.
Is his feeding tube placed NG (stomach) or ND (duodenum)? Mikey was not able to tolerate feeds for some time when it was placed NG. He would vomit and then aspirate. They moved the tube to ND so it would bypass his stomach. He tolerated the feeds much better though they did have to give him Prevacid to cut down the acid that would accumulate in his tummy since it was empty.
ReplyDeleteHe also had a feeding pump that administered the feeds slowly. I think that bypassing the mouth leads to serious indigestion. Fast feeds without the exercise of the mouth muscles leads to vomiting, IME. After Mikey had his tube removed and went back to oral feeding, he never vomited again and rarely spit up. I hope this is the case for Nicholas as well.
xoxo
Erica
Have you talked to the doctors about spinning your breastmilk in the centrifuge thing?
ReplyDeleteI am just so so so sorry that this is happening!
Rubbing his head is making better. The "ministry of presence" feels weak, but it's very powerful. Hang in there - your hope helps him.
ReplyDeleteHis body is strong and resilient, it will be working on healing. I know he needs food and sleep, but the doctors will be able to figure something out with you! Hang in there!
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