Poppy recovered incredibly well from getting her tonsils and adenoids out and ear tubes put in! And in the weeks since, she has completely weaned off of oxygen for sleeping (at least here at sea level, we will see if the same goes for MT when we get home). She is noticeably more comfortable when she sleeps and is even more interested in trying food!! Thank you Jesus!! This is all we could have hoped for. It makes me wonder if she’s able to smell and taste a little better now that she can breathe! What an answer to prayer! Hallelujah! No doubt this is a major contributor to her successes in the intensive feeding program!!
On Tuesday morning, Poppy started the long anticipated Intensive Feeding Program!! The program is just that….intense. We (Poppy, Crosby, Brad, and I) go to the hospital for eating sessions at 8:30, 11:00, and 1:30. Each session is 1 hour long…we do this for 2 weeks. We pack food for everyone and eat together. The frequency is what makes it the most intense on top of having 2 kids under the age of 3 to wrangle and keep ‘happy.’ 😉 But so far, Poppy is doing beautifully! It seems to be a great dynamic when we all go and eat together. Since eating is such a social part of life, it’s definitely been a blessing to have all of us there to encourage eating for her. Crosby is doing a fabulous job supporting her in this! He is the best big brother she could have ever asked for. We are already exhausted and we’re only 3 days into the program! And I’ll have to find a way to keep up this frequency once we are home, which with her already busy therapy schedule and Crosby’s preschool schedule, it will be a challenge…but don’t get me wrong…a good challenge to have…a challenge I’ve prayed so hard to come for her. I’m praying the Lord continues to grant us endurance…the days are long and short all at the same time. 😉
I know it may sound crazy, but when kids are on a feeding tube, their intake is so closely monitored due to medical reasons, that most really never have a chance to get hungry, as their feedings are a certain amounts of, in Poppy’s case, medical grade formula, given at specific times. The problem with doing a hunger based wean without medical supervision for someone like Poppy, is the risk of damage to her kidneys and too high or too low anti rejection drug levels which can imact the health of her transplanted heart. Anti rejection drug absorption can really fluctuate when intake is not consistent.
The idea is a medically supervised hunger-based wean where kids and their families are well supported and monitored as the child learns to associate eating with hunger. We eat with Karen 3 times a day, and also visit frequently with the nutritionist to ensure Poppy is getting the nutrients and fluid volume she needs to survive. Poppy also has frequent labs to check her kidney function as well as anti rejection med levels. These tests tell us how well her kidneys are affected by her decrease in fluids, as well as the level of anti rejection medication in her system. Poor kidney function can damage the kidneys and anyone on anti rejection medication is already at great risk of kidney damage over the long term, as the medications are literally hazardous and hard on the kidneys. Too low of anti rejection drug level can cause greater risk of rejection of her transplanted heart, and too high of level can cause her to be over suppressed and a further increase her risk of cancer. In order to get an anti rejection drug level result in Montana, it’s an at least 4 day turn around. In Seattle, it’s overnight. So far, her labs are looking good and at her last weigh in, she had only lost .2kg in 5 days!! We also watch her urine and stool output, as some kids tend to become constipated with the drastic reduction, but so far that has not been the case for Poppy! Woohoo!!
The Friday before starting, the nutritionist started slowly cutting her calories, gradually reaching an 80% calorie reduction. Poppy has been getting just 20% of her typical daily calories since Monday, and her fluid intake has also been decreased slightly and replaced with water. She is finally experiencing real hunger, and it’s turning out to be a great motivator for Poppy to eat!
Since starting the reduction, Poppy has definitely become more interested in food, even leaning forward to take a spoonful of food offered to her!! Since starting the program on Tuesday, Poppy is doing amazing!! It is absolutely incredible how far she has come in the last month! She is taking to solids very well, quantity seems to be more and more each meal. Drinking fluids is more of a challenge, but she’s still trying! It’s so obvious the Lord’s hand in this. His timing, His provision, His working in her, this quality time here doing this as a family…all of it is such a tremendous gift. Thank you Lord!! We are just giddy and goose bumped and beyond excited this is happening for our girl. She is doing so awesome!! 🙂
We are noticing some redness and bumps on her cheeks and neck with every meal, so we are exploring the possibilities food allergies. We would love your prayer for wisdom with that. I’m hoping it’s just a new food exposure ‘break in’ period, because she’s never eaten this much before, and the formula she is on is hypoallergenic and already broken down..her body’s never really had break food down much before. I’m really hoping and praying this is just her body’s way of getting used to working the way it was designed to work.
After the Intensive Feeding Program is over, she is scheduled to finally have her annual cardiac cath with biopsy and MRI (the one she’s been trying to get since April, but keeps spiking fever beforehand prompting them to cancel and reschedule multiple times!!!!) on July 29th. It’s way over due and really really needs to happen, so we would love your prayers that she is able to stay healthy enough to be ready to go under anesthesia for that.
Your prayers mean so much to us. We can feel them for sure! 🙂