Landon has an appointment with the GI doctor on Thursday morning- I'm just hoping we can all make it until then. Yesterday Maya called around 1:30 to tell me that Landon had a terrible morning and screamed so much he turned blue. She was obviously very troubled by his behavior- she said that in 22 years of watching babies, several with reflux, she had never seen one in that much pain. She reassured me that he was fine staying with her, she just wanted me to share that observation when I called the doctor to beg her to see him as early as possible. I'm really looking forward to the appointment. So far there haven't been any tests or x-rays at his doctor or ER visits. The doctors listen to my story and all agree that it sounds like reflux. I don't necessarily disagree, I just want proof that we know what the problem is and we're doing everything we can to help him to comfort me when he's hurting so much. And I can't shake the feeling that something more is wrong. No doctor has seen him at his worst and I think they all write me off as a first-time mom who thinks the crying is worse than it is. At least now I have Maya's support that the crying (no, shrieking) really is that bad- they can't just call it colic and expect me to go home again.
I'm also just plain mad and frustrated. In the brief intervals when he's comfortable he's so adorable and SO much fun. Yesterday I stuck him in his crib for a few minutes while I folded his clothes and he rediscovered his mobile- I think it was the most exciting thing that's ever happened to him. His entire body reacted with happiness- his arms and legs were flailing about to the music and he had a giant smile on his face. It was so cute it almost made me cry- we so rarely get to see that side of him. And he so rarely gets to experience that side of himself since he's normally consumed with hurting and screaming. I missed out on his first 2 weeks because he was in the NICU and now I feel like I'm missing his first few months because of the reflux- and he's missing out on his first few months too. I don't think I'll go into the details of how hard this has been on JP and my relationship over the past few weeks. Deep down we're fine, and we know that, but on the surface things have been pretty tense. The past few days we just haven't spoken much when we're home- it's the most effective way to avoid snapping at the other.
The countdown to Thursday at 9:30am continues.
Take it from someone who has been that confounding child whose medical symptoms aren't taken seriously by doctors. Sometimes a parent just has to put her foot down! After a year of illness, my parents had to camp out in the waiting room of a surgeon's office and DEMAND that they see me. A major operation later and they were like, "Oops, guess omething major *was* wrong." My Mom felt so guilty that she hadn't done something sooner, so her new mantra is "trust your instincts." If you feel like they aren't taking you seriously, tell them that. Do research and come prepared with thoughts on a treatment plan. Insist on seeing a specialist if you think you need one. Request a test that might help. Be an advocate for him because it's rare that any doctor will step up and advocate when they only see him for 10-15 minute visits. Good luck!!!
ReplyDeleteDo you think they'll do an endoscopy? It finally nailed down what was going on with my reflux issues (Barrett's, unfortunately). I hope he recovers quickly -- the poor guy. And your poor nerves.
ReplyDeleteAw - that sounds so sad. Poor Landon, and poor you guys. Obviously, I have no experience, but I read about a test called a Ph Probe - perhaps that would help the doctors realise how serious it was since it monitors the reflux over a 24 hour period? Anyway, trust your gut!
ReplyDeleteHUGS to all three of you. I hope Thur. sheds some light on his situation or at least a direction to follow. Your relationship with JP will be different now, not worse, just different. I think you're handling it well...sometimes too much talking starts arguments.
ReplyDeleteNo advice, just well wishes.
Keep your head up. We are thinking about you!!!
ReplyDeleteNext time he has an attack, you should video tape it and play it back for the doctors (at full volume)! Maybe if they saw the seriousness of the attacks, they would have other suggestions. I'm sure it doesn't help that every time Landon's at the hospital, he's convincing them nothing's wrong and Mom's imagining it.
ReplyDeleteMaybe you could get a sitter soon and spend some quality, away-from-screaming-baby, time. Just stepping away from the situation for a little while might be extremely therapeutic.
Hang in there! I hope he feels better soon (for all your sakes!)
I'm sorry. I hope your little guy gets all better.
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