Update on Tyler: 11/17/14 After my last post I received at least a dozen messages from concerned SMA parents about the care my son was receiving. It was I opening and scary to say the least! From last night till today I have been doing my best to advocate for my son and convince these doctors the things needed to be changed. They did a chest xray this morning and it shows that not only is his lung stoll collapsed but it looks a little worse in the bottom right side. Still has Pneumonia. Are you f****** kidding me!? This is the second time they did not listen to me here at this hospital and it has caused my son to get worse. We have left messages for our doctors at Columbia in New York City but as usual we have not heard back from them. We have emailed two of the best SMA doctors in the country thanks to some of the other parents telling us to do so. We have not heard back from them yet either but in the meantime here are the changes that I have had them make.... He is now on BiPAP 16/6 rather than 12/6. He is agitated but slowly calming and tolerating it. They had him receiving his respiratory treatments Q6 not every 4....I KNOW.....so I told them that MUST be changed to Q4 even thru the night. He also has had Pulmozime added into his nebulizer regimen. So BiPAP is to be on as much as possible throughout the day and night. Respiratory treatments consisting of the vest with a nebulizer then cough assist followed by deep suctioning. He gets to eat a meal and take a break for a short while and then right back on his BiPAP. Also, I requested a nutrition consult and she is changing him from a full liquid diet too some soft regular food. I have also gotten Duocal to add for his calorie intake. SMA moms.....is this a step in the right direction finally??? Did I do good?? I hope so! Lets hope and pray that by tomorrow morning they will hear some improvement in the quality of his lung. We really need prayers not only for my son to get better but also for all these doctors to listen to us mommies and daddies a lot more. I dont care how much schooling you had you will never know my child like I do DOCS! Im staying by my sons side as I have been from the beginning and my husband Nick is home taking care of our other son, Nicholas. I cannot wait to have both of my baby boys home and put this nightmare behind us. Have a wonderful day. Hug your babies! xoxoxo
Posted on: Mon, 17 Nov 2014 19:02:27 +0000
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