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So after the surprise doctor visit last Monday and ER visit on Thursday, we had a sleep study on Monday to see what was going on. The doc who came in to give me the report was a different doc, so I wasn't as comfortable with his knowledge of Milo's issues. Anyway, he said that the 2 sleep studies were completely different. In the last one, Milo had a lot of obstruction. He had the adenoidectomy on Marh 11th. He had obstruction again this time, maybe due to his tiny, set-back chin. He also had several episodes of central apnea. The doc said that it could be viral, related to his RSV (which doesn't make sense bc he had the last sleep study a month after the RSV hospital stay!), or something that has been going on for the last week. Milo has had several episodes of his pulse racing in deep sleep now, too. We've turned his O2 up on most nights to 2L with poor results. During the sleep study, he had many periods of 12-second pauses, which wouldn't be SO bad, I guess, except that he desatted VERY quickly. He has no reserves. I don't know what his pulse did overnight. It was ok last night here on 2L, but on other nights, it's not as ok.
The doc asked about being followed by a neuro. We are not (yet), but many docs have asked about it. We need a referral to go, but no one seems willing to do it!!! Apparently, Milo needs an MRI, and we need to figure out this pulse thing, but the doc just said, "Let's repeat the study in a month." Ugh. In the meantime, we're panicking because we can't wake him up sometimes, he's turning blue while he's awake, and more. We know that his pituitary gland doesn't work entirely well for other reasons. Scary that this could be the cause.
So, that was all completely unclear. Sorry. Basically, another sleep study to determine if this is short- or long-term, and nothing in the meantime to help him or us out with understanding any of it. I guess I feel like anything involving failure of the brain. heart, and lungs deserves a second look and NOT just while he's sleeping!
I agree, not even the pediatrician will give you the referral you need? I'm sorry, I have been trying to keep up but dont know if you see any therapists. I have had great success having my therapist make calls to have things done as well. I am so sorry that you having such trouble finding out what is causing all his issues. I agree with you that anything having to do with heart or lungs should be handled immediately. I would be asking why they have him on oxygen and monitors if they arent going to do something when they show you there are issues
I am sorry, that sounds really scary. I would encourage you to keep fighting for what you know is right for Milo. I know it's tough, I just keep asking and pestering until someone finally gives in to what I feel Carter needs. Mom to a SN kids is really a multitude of jobs, one of which is advocate.
Thank you, ladies! I'm definitely annoying to the doctors, I'm sure. It's paying off, little by little. Today, we got a high-flow oxygen compressor. The person at the medical supply place called the doc and yelled for me. Hehe. I called the regular ped today to schedule a follow-up. The receptionist was VERY rude about every little thing. She yelled at me for trying to get them in for follow-ups for SURGERY and an ER VISIT!!! I was shocked at myself-I basically ordered her to make the appointment, or I would complain to everyone I could think of about her barring my children from proper, medically-needed and entitled health care. She got quiet, then asked for my info and made the appointment for Monday. Of course, I'm using this appt to ask for the MRI and other scans. There are a few new things that have popped up today for Milo and his breathing. I called to report them, but no one has called back. Again, we're not comfortable taking Milo in because everyone has their sick kids at the ER to be checked for swine flu. Who knows what they actually have, but it would be devastating to Milo. Actually, Kannon can't take that much right now, either. He has a mysterious chest cough that has lingered for several weeks.
Anyway, I'm doing everything I can without harming my kids or jeopardizing the relationships with the doctors. It's just so scary. I found out a bit more, and there were MANY episodes the other night, and within a few seconds, Milo's sats would go from 100 to 74. That's not good, no matter what. His pulse was high (140s and above) even when he reached deep sleep and his oxygen was good. It would jump in a few seconds, too. There's more, but none of it is good or encouraging, and leaves me to ask again, WTH are they thinking?!
Thank you for letting me get my frustration out here. Surely can't do it to the doctors (even as much as I would like to!).