Yep, since my last post about Ethan being admitted, he has gone home and come back twice in 11 days. After the first admission he was home for 2 days and at his follow-up discharge appointment in clinic on Friday the 22nd, they took one look and listen at him and put him back in over the weekend. That admission they finally did blood work because his chest x-ray again showed no solid pneumonia, and his virus panel was negative for everything. The blood work showed an elevated white count of 17,000 (high end of normal would be 11,000) which indicates an infection of some type. They started him on some antibiotic and sent him home on Sunday once they got his oxygen weaned down to room air while awake and 1/4 liter while sleeping.
Sunday day and evening he was marvelous! Back to his normal self, laughing, rolling around, just all around acting like a goof ball. I put him in bed and on 1/4 liter of O's just to be safe, only to be woken at 1am hearing him fuss. When I checked on him, he was working really hard to breathe, looked to be a little puffy around his face and neck, hands and feet, and began retching. I turned his oxygen up to 1 liter and he seemed to get a little more comfortable, but he was very fitful the rest of the night and pretty miserable. All day Monday he was not terrible-but not great. He continued to retch, so I kept turning his feeds down throughout the day-but when the vomiting began at 5:30pm-I knew we weren't going to be staying home for much longer. At the ER his sats were 82 on 1 liter so in he came. He is on 4 Sutherland room 3 right now being followed by the Purple Team again whose attending is Dr. Keith Mann. I was thrilled to find out that Dr. Mann is the attending this week and going to be taking care of Ethan! He is the physician who began the Family as Faculty program where residents are assigned a medically complex kid to home visit, follow to clinic visits and just try to get an overall view of what it's like to have a kiddo like Ethan. We had two residents assigned to Ethan whose rotation was in February where they visited our home and got to know a little about our special guy and our lives. Anyway-I am a HUGE supporter of the program and thus of Dr Mann and feel lucky he's taking care of us this week!
Where are we right now??? Ethan's blood pressure is running a low, his heart rate is high, his oxygen is on 1 liter to keep him above 90, he coughed most of the morning so far, and his hands, face and feet are puffy. His belly and chest are distended now too. His white count is up to 27,000 after having been on antibiotic for 4 days indicating it's not touching whatever infecction he has. His BNP, or brain natriuretic peptide, one of the labs they did last night was elevated-WAY elevated-3,350, whereas <100 is normal. This is the lab work used to indicate that congestive heart failure is likely. Soooo, he is getting an echo today, an x-ray of his belly, some more lab work, and a dose of lasix. He has never been in congestive heart failure before, and it just may be some right sided failure this time due to his respiratory compromise, or it may not be. The echo will give us more definitive answers, and what we see him do with the lasix. Right now we are in a holding pattern. I will update as we know more. In the meantime we are hanging out listening to Taylor Swift and I'm catching up on the first 3 seasons of Grey's Anatomy!
Below are a couple of pictures from my Fabulous 40th Birthday party from last weekend-I have tons more-and will load them on my FB page soon. I want to say Thanks to all of my family who helped pull it off while Ethan was in the hospital! My Aunts Kathy and Mici, who stayed with us last weekend, helped get all the meat smoked and made the beans and salsa and corn confetti salad, did laundry, and dishes, and kept Parker busy while we ran around. My cousins Tony and Jim and sister Kim who set up the clubhouse tables and decorations and made the place look fabulous! Michelle, who made all the delicious cupcakes! My Mom, who made the potato and macaroni salad, and cut and blinged cupcake toppers. My Dad and Teresa who went down to the hospital and sat with stinky during the party so he wouldn't be alone. Thank you, thank you, thank you everyone! It was a wonderfully, fantastic party that won't be soon forgotten, I love you all very much! To all my friends and family who atttended-thank you for the gifts and cards and for being there. One thing I've learned in the last 40 years is that I have some pretty amazing people in my life that I wouldn't trade for the world!!
Gotta run-Ethan is not comfortable and is wanting to be held-which is quite an ordeal in itself!