Day 21 Update: First of all, hes OK and stable. They did have to reintubate this morning around 5AM. It seems to be a trend that he get so much gunk built up that the suction doesnt work. They do suction him regularly but it appears that its deeper and the only way to get it out is through replacing the tube. When they did it, they saw all the crud and got it out. It was around 5AM that his oxygen needs increased and his saturation kept falling... After he was reintubated, the mucus was removed, and they also moved him back to the conventional ventilator. He was out growing the oscillator since it was already on very low settings. Since this morning when that all went down, he is on the vent, breathing fine, gases are fine, and he is comfortable. At the end of the day, the fluke today was a mucus plug. Nothing more. The positive was he is on the conventional vent that he can handle. Literally as I was typing, the doc came in saying he is still over-ventilated. That just means the machine is doing more work than it should... so they are turning down the settings. He is peeing a bit better, they want to see about 24 ml a day and he had about 30 yesterday. Sure, they want to see more but this is at least above par. They sent another blood culture yesterday... hoping that is comes back negative. The longer it takes to come back positive (or never at all) the better. If you recall, it took about 10 hours, then 12, and then 18 hours twice for the growth to show an infection existed. Were at about 20 hours and no growth. Most likely Infectious Disease will want to see 72 hours of negative before we can confirm the infection is gone. We are almost at 24 hours negative. His sodium is back up to 137, normal range. They are hoping to maybe hit about 140ish and that way they can order up some diuretics to help release the fluids. Its a balance act because the diuretic can lower his sodium and electrolytes... Since his are finally normal, we want to be cautious to not lose control again. He didnt respond well to lasix (a diuretic) before so I am a bit skeptical. But also, his creatinine levels (kidney function) were high.... as of this morning they are 0.8, the lowest ever..... a good thing. Maybe now if they order the diuretic, because the kidneys are working better, it would actually help to flush things out. His weight last night was 1 pound 15 ounces... an increase of 40 grams (about an ounce). He is moving slightly... definitely not the active boy he was, yet. He does respond slightly to grabbing your hand. I teased him and put a finger next to his hand... He would scrunch his eyes and raise his eyebrows and bend his wrist looking for me.... Its like if his eyes were fused still. I think he is just a bit too weak and probably all the fluid is preventing him from opening. But I wont be surprised if today or tomorrow he is opening back up. It was nice to see a controlled reaction/movement. Yes, like any baby there is some uncontrolled. But these are positive signs, if you ask me, considering the confirmed brain bleed. Again, we dont know how much, if any, damage but at least this is positive. Besides this mornings hiccup with the mucus plug, he is great. Gases are back to normal, blood sugar is perfect, the boy is peeing, he is showing some controlled movements, the blood culture is still negative, his C-Reactive Protein (CRP can help indicate infection) is dropping, his White Blood Cell count is dropping, and his sodium is back to normal. We cant ask for any more. The doctors and nurses seem to be on the right path. But considering where we dropped to, I have to believe its been the non-stop prayers and support. Each night I tell him how proud I am of him and his fight. I tell him how there are so many people behind him fighting...Thank you. Lastly, several folks asked about a GoFundMe or asked if the t-shirts would be available again. Thanks to Terry Harris and Pam Denneny, there is a GoFundMe account should you want to help. No obligation of course, but Ill probably just say it once for those folks that asked about it. Also, Andrew Mametz re-opened the Bonfire shirts so those are available for those that missed out. The idea behind the shirts was for you to get them, take a pic wearing it, and I could hang in Ethans room to really surround him with love. Both are very generous and we are extremely thankful. GoFundMe: gofundme/kaqbqw Bonfire Funds T-Shirts: https://bonfirefunds/ethanstrong Thank you for your continued prayers and support. #EthanStrong
Posted on: Sun, 18 Jan 2015 19:40:16 +0000
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