Waverly was admitted again in PICU this afternoon after yet another night of high oxygen needs and low sats. She doesn't seem really that sick and her chest X-ray didn't look too bad (just hazy) but they decided to go ahead and put her in and get her started on bipap so she can have that at home. So she's been on it all afternoon and we will get her home one tomorrow and hopefully be out of here soon after that. It shouldn't be a long stay. Pray that she will tolerate the bipap ok and that we can get her set up with all that she needs and get her home quickly. Thanks!
We are from Poland and we also have a child with Miller-Dieker syndrome. Children like ours are very brave, so we hope that Waverly feels better soon. We will pray for her and for you.
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