I love Dr. Lungs, seriously, I really do. It is wonderful to me to have a doctor that really seems to care an awful lot about your child. And he does. I believe it. We had a very short run of snot free life, well, sadly it has returned with our other bf vomit fest. Friday was rough, she couldn't keep a thing down and slept the afternoon away...after she cried uncontrollably FOR.EVER. I can't help but get concerned when it is so unclear to me what is wrong with her. All I can do is hold her, so that's what I do. This past week has been very strange for Lillian. She was up Wed. and Thurs. nights from about 2-6 AM and Friday was puke fest. I couldn't even get pedialyte down the poor thing. Saturday seemed to be fine, but then on Sunday and into today we have had several puking episodes. So add our other bff constipation to the list. Ok, back to subject....her lungs sound great. He wonders if there is some strange bone structure in her face that prevents her from draining properly. He says this is common with kids with pierre robin. That the bones can narrow. Sheesh. I'm not sure if this is the case...how could we know? He says he thinks this snot issue is allergy/sinus related and wants us to add claritin to the mix...( oh snap, gotta put that on the list tomorrow) . SO, another med comes on board. We have a new appointment with the allergist May 31st. I had to miss the one on the tenth as we were automobile-less. Dr Lungs has ordered a sedated CT of her sinuses, he sees lots of inflammation from just looking up her nose. I'm also growing concerned with her skinny little body again. She only weighed 26lbs and she was 3 1/4 ft tall I think. Her bones just protrude so badly, she bruises on her hips just from the bone poking through. She, of course, remains a happy little girl, going through it all with a smile. Friday we have the CT. Good good times. I don't really mind too much what she needs to have done, if it helps her feel better, that's what matters to me. I've been holding on to this little dress for two years and she can finally wear it, she loved it.
Does she have constipation a lot? Because that can add to puking if they are backed up. Miralax everyday keeps Arina going, and helps Jax, although Jax still needs a suppository every night to make him go. But I never let him get backed up. And can you get her a GJ tube, so you can feed her into her intestines and avoid everything coming back up?
ReplyDeleteMichelle; I wish you would've mentioned what was going on. Would have def prayed w/you. Lillian is such a sweetie! Certainly hope she's feeling much better soon.
ReplyDeleteI'm sorry that so much is going on. I'm glad that she is still smiling through it all. She looks so cute in her dress!
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