Thursday

Home with a vent-free baby about 10:30 this morning. We successfully changed him over to toddler formula, increased his sodium, decreased his use of the pulse ox from constant to intermittent, and decreased his breathing treatments to 4 times a day to 3. We also received a cap for his trach. While we haven't tried it on him yet, we're excited to be moving him forward. Thank you for all your prayers.

Thursday

Home with a vent-free baby about 10:30 this morning. We successfully changed him over to toddler formula, increased his sodium, decreased his use of the pulse ox from constant to intermittent, and decreased his breathing treatments to 4 times a day to 3. We also received a cap for his trach. While we haven't tried it on him yet, we're excited to be moving him forward. Thank you for all your prayers.

Wednesday

Luke had a rough night last night due to all the equipment they used to measure his sleep, although he passed the sleep study and will be returning home tomorrow without a vent. However, we are changing him over to a toddler formula and his sodium levels are slowly, but steadily declining, so they're keeping him one more night to see what we need to do to keep his sodium stable.

Tuesday II

Luke is slowly discovering how to make noises with his voice. He has been growling for the last 45 minutes while lying in his crib examining his tiger ("Hobbs"). Yes growling. That's the only way I can describe it. It is really cute.

Tuesday

Luke's sleep study got moved up from tomorrow night to tonight. We're hoping that discharge might be moved up as well, but nobody's made any committments. So far, Luke is exceeding their expectations. He's hanging out just like normal and still using his speaking valve all day. Thanks for your prayers.

Monday Night

Just got Luke settled in for night 1 of 3 at Baylor. He's doing just fine, though a tiny bit hyper and fussy due to being in different surroundings. I don't expect to get a lot of sleep tonight, but so far it hasn't been as bad as I was dreading, but then, we're only 11 hours in. I'm remaining positive and expecting everything to go smoothly for Luke's first night vent-free.

Monday

Headed off to Our Childern's House in a few hours. Dreading going, but can't wait to return on Thursday morning with a vent-free baby and a new SUV.

Wednesday

Luke is scheduled for his three-night vent weaning at Our Children's House at Baylor starting Monday. We are thrilled to finally be getting rid of that hunk of metal, but dreading returning to Baylor - however short the stay. Please pray that all goes smoothly, that we keep our sanity through this week, and that Luke doesn't take any steps backward from using his speaking valve while we're there.

***************************************

Guess who wore his speaking valve from before he woke up this morning, all the way through Physical Therapy, all the way through Speech Therapy, AND ate a whole cup of cereal? Yup. It was Luke! Hard work is paying off!

Monday

Took Luke to the cardiologist today. Other than slightly weaning one of his anti-arrhythmic drugs, she didn't change anything. She said Luke's doing great, and she doesn't need to see him for 3-4 months. On another up note, Luke's used his speaking valve for several hours today and a David made him eat a whole cup of cereal. Progress.

Reid Elley

Please pray for my friends Kristen and Chad. Their nine month old son passed away today after getting an infection after his trach surgery. His parents never got to take him home from the hospital. Please pray for them as they deal with this terrible loss.

Reid's Blog

Saturday II

Luke's had his speaking valve on for most of the day since about 9:40. We gave hiim a break for about an hour after his nap. All three of us have suffered through crying, coughing, suctioning, and recovering. Our hope is that if we can help him master it today, he'll be able to use it around the clock in the very near future. Our desperate desire is to have Luke decanulated by the fall.

Saturday

Luke's had his speaking valve on for over an hour today, minus a few minutes here and there to suction and let him recover his sats before putting it right back on. He's protested periodically by holding his breath, but Mamma and Daddy are waiting him out by distracting him until he forgets again that he has it on and starts breathing normally.

Thursday

Pssst - Luke is sleeping with his speaking valve on. Don't tell him!

Prayer Warriors

Please pray for my friend's baby Reid. He got his trach surgery a week ago, got an infection, and is really struggling to stay alive. Please pray for him to turn a corner and start getting well. Pray for strength for his parents.

Reid Elley's Site