Well, Grace is doing much better and is getting sprung from ICU this morning. Yesterday, they got her off of the dopamine and her blood pressure held steady. Last night, they got her off of the oxygen and her levels held fairly steady. She is still fighting the pneumonia so her oxygen levels are a bit lower than normal - but acceptable. They just removed her central line - the last barrier to coming out of ICU.
The diet has been a blessing and a curse. She has remained seizure free through the worst of this. She did have a few small seizures at the onset of the illness. However, given her history, everyone expected the seizures to come. The medicines to stop the seizures were at the ready should they be needed. Thankfully, this was not needed. The drawback from the diet has been her nutrition. When she was on the dopamine, she was not allowed to eat anything. Normally, the IV fluids would have dextrose in them and that would surfice. With the diet, Grace needs to have plain saline - no dextrose. With no fat coming in, she was buring whatever fat and muscle her body could find within. And she was hungry. Thankfully, she was allowed to have clear liquids last night and this morning she was allowed to have some real food for breakfast. It was with renewed appreciation that we measured out the heavy cream, oil and food this morning!
We are thankful for the doctor Friday night at St. Mary who had the sense that things were not quite right and had Grace transferred to CHOP. Then once she was admitted at CHOP, that doctor felt that things were heading downhill quickly and started some treatments immediately that really prevented this from getting worse. Several of the doctors in the ICU said that Grace would have been much worse off if we had waited to get her in. Our sweet baby has a guardian angel or two looking out for her!
Thank you for all of the prayers and good wishes. Grace bounced back quicker than they expected. We were being prepared for several days in the ICU before they expected her to stabilize on her own.
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I'm so sorry to hear Grace was back in the hospital. It's so hard to get excited when they're doing so well and you know another admission could be right around the corner. Hang in there guys, this diet is really worth it!
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