It's hard to stay positive when your pissed. I am so tired of Jonah being sick. Okay, that's a broad statement! What I mean is I'm tired of him catching or creating illness every other week! Yes I know he has a lung disease but come on! I have never seen a child with "something" always going on. I'm tired. He is off of his sleep meds which is a good thing but nights like last night I would sell my soul for some sleep!
I called the Dr Monday like I had posted and she wasn't there. She called me this morning and said it sounded like a GI problem...hence I had mentioned that he was sick and his feeding tube was leaking around the site, I might add that this happens to most who have feeding tubes. I said "no, it's not a GI problem, It's a coughing so much he is throwing up problem." To be honest I just don't know how to handle it. He has been coughing like crazy and has mucus overflow. I started him back on steroids but I see no change. So the Dr says he probably has a sinus infection...I don't agree, but I'm not a doctor and putting him on stronger antibiotics then his daily ones sounded good. At this point anything to stop the snot factory.
What do I do? I feel like the doctors who are seeing him are sick of dealing with his problems. I know I'm seeing one of the best pulmonary Dr's in this area, and I love her dearly, but I can hear the frustration in her voice. Does she not know I'm just as frustrated? Ugh, now I'm in tears. i have no clue what to do for him. I made a goal not to have to call her for 3 months, but when it got critical on Monday I had to make the call. His Sat's were in the 80's and the...COUGH!
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perhaps he has an infection in his lungs that is flaring up periodically? can you get any tests run on that mucos he's spitting up?
ReplyDeletei think you should call your doctor as often as you need to. do not let her tone get in the way -- and if she's poor bedside manner, perhaps, it's time to get another doctor who will work with you better.
i hope he gets better soon. i bet it would be really nice to have a few weeks where he's feeling well!!!
Sarah
Big Hugs to you Jess. I know I pick up something/everything every week and my poor mum gets so frustrated for me and she just feels so helpless. Of course it's really horrible for Jonah but it's also really tough on you too! Ring your dr as often as you need. At the end of the day that's what they are paid to do- listen and help out! I really hope things improve soon for you both! (((Hugs))) Gem xx
ReplyDeleteSome days all you can do is keep on keeping on, sounds like that is where you are.
ReplyDeleteDon't feel bad about calling the Dr. It's nice if you can go longer between calls and appointments but not calling is not going to help Jonah when he is sick.
I hope he gets better quickly so you don't end up at PCMC again.
Prayers and good wishes headed your way.
Jess,
ReplyDeleteYou are amazing! I just love you! Like Bethany said, keep on keeping on or as that darling blue fish says..JUST KEEP SWIMMING!
I can not imagine what you are going through. You are J's best advocate in life and he is the luckiest kid in the world to have you as his mom. You are so amazing and great.
ReplyDeletehang in there and when you can't call me and I will do whatever you want me to.