Noahs still holding on, but he still has quite the battle ahead of him! We got him on ECMO this morning, and despite frequent bolus doses of epinephrine, his rhythm has stayed perfectly paced. His surgeon, Dr. del Nido, decided it would be a good idea to do a head CT, to check for any life threatening brain damage. The CT showed a significant stroke happened within the last 1-4 days. Neurology stopped by to talk about it, and while it is severe, they dont believe its detrimental to Noah.. But well have no way of knowing certainly until Noahs awake and can show us what hes lost. Hes currently having an EEG done to check for seizure activity, and after a little less than 4 hours, there were no seizures.. But our ICU attending decided to put him on anti seizure medicine just in case. Her biggest worry is that Noah would seize through the night, and no one would be looking at Noahs EEG again until morning. Seizing for long periods of time could potentially cause more brain damage, and Noahs at high risk for seizures because strokes in children can cause them, and because there is bleeding on his brain caused by his incredibly high Glenn pressures last night. From a neurological perspective, our biggest area of concern is temporarily his stroke. Sometimes the acute stroke itself is fairly benign, but because the tissue and vessels in that area arent healthy, they can start to bleed, and that can cause irreversible, and life threatening complications. Were watching him closely, and hell have frequent head ultrasounds and CTs until hes off ECMO and off the heparin. Heparin is both our friend and our enemy right now. Hes on high doses because he frequently clots off his ECMO circuit, but theyve lowered the dose as low as possible today because bleeding from the chest is common post op. Noah is bleeding a lot. Approximately 100 mL/hr. Were replenishing his blood products and platelets consistently, but we need to get Noahs bleeding under control. Its so scary. Our biggest concerns tonight are absolutely Noahs bleeding. Hes holding his own pretty well, otherwise. ECMO is controlling Noahs oxygenation and gases, currently, but hes exceeding expectations. His lactic acid before being placed on ECMO this morning was 21. Normal is something like .4 or .7 to 2.2.. (Im not sure exactly, but LOW in comparison.) they truly believed Noah would need over a day to clear the lactic acid, but my little warrior brought it down to 3.2 in just under 12 hours. Thats incredible. It means Noahs still in there helping fight this fight. His surgeon is amazed by his resilience, he doubted Noah would make it through the night. The fact that I see hope in his eyes gives me so much hope. But Noah is still so far from safe. He has a long way to go, and he could potentially fail his ECMO wean. We dont know what Noahs capable of doing by himself. And that scares me. I feel like Im drowning in my own fear. Trying to hold on to whatever hope I can find. Today was hard. Today was the hardest day Ive ever had (and I know Ive said that more than once, but its only gotten harder as hes gotten sicker.) I spent the day at his bedside in constant tears. While Noah is still holding on, Im so afraid that Ive already lost my baby. Im so afraid hell never open his eyes again. Im so, so afraid of a life without my sweet Noah. So please continue to pray for him. Hes fighting SO hard. But he still has so far to go.😢❤️💙
Posted on: Wed, 06 Aug 2014 02:13:30 +0000
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