12/18/14 In the wee hours (pun intended) of the morning, Kaylah began to ask for Juice. LOTS OF JUICE enough to change 2 FULL diapers worth by sun up. This appeared to be a bad thing because it was a major characteristic of DI - something she was not completely out of the woods on. Mom and I were pretty worried about it. - She still hadnt had another dose of DDAVP... so it was out of her system by >36 hours. The doctors seem to be surprised that she was still able to concentrate her urine. (something the DDAVP was doing for her) We kept waiting to hear the bad news, but so far, it had not come. Kaylah continued to drink juice, had some yogurt , and shorty after had some Pediasure. By then she was pretty full - just by sheer volume. Morning meds came, she took the first two pills just fine, but when the third hit her tongue... EVERYTHING CAME UP. Mom and I were thinking oh god, here we go again. We put her in the shower and mom began washing her while the nurse and I changed the bed. A few hours went by, all seemed ok despite her rocky start. I ordered her a nice little breakfast consisting of all the breakfast staples she loves: eggs, sausage, and pancakes and we tried again. She ate roughly half of that breakfast, and began looking uncomfortable. Speech Therapy and got to watch her eat. They were impressed y her belching but concerned at the same time. They will continue to watch. She was looking constipated and bloated afterwards- and more than just from the little bit of breakfast she just had. We then asked the nurse for some Miralax and Momma went to work with the OMT. Later she began to improve and was able to participate in PT and OT. This really challenged her body and she was exhausted and slept the rest of the day. Everytime we sat her up, her heart rate would shoot up to 150s - 170s. It would get up to 190s-200s when we stood her up. We are very concerned about this. Her surgeon can only tell us that she has autonomic dysregulation and it should improve and not be permanent. She is burning so much energy just in her heart rate alone. She is having issues digesting and continues to sweat profusely. When she was sleeping, her rest was not deep or restorative, but she did doze and then say a few things... then doze again. Her main doctor simply keeps saying she is going to continue to get better each day.... So we are doing our best to believe them. Time will tell I suppose.
Posted on: Sat, 20 Dec 2014 09:30:42 +0000
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