05 Jun Good & Bad
Keegan’s still home and still doing really well overall. He has enjoyed lots of “cuddling” time with Rusty (the quotations are intentional; think 20 month old boy with big dog, and I think you’ll understand how cuddly his time is with Rusty). His favorite pretend play right now is playing with a phone. He holds it up to his ear and babbles away. He’ll hold it up to Mama’s ear and babble away, and today, he held it up to Rusty’s ear and said “EH!!”, which I understand is baby-speak for “say something, Rusty!” He is really enjoying riding his push-trike to the park near our house after dinner when his feeding pump is off for an hour and a half. He has also had his first play-date with our friends and neighbors, Lainey, Gage, and Ainsley. Keegan and Lainey often take afternoon rides in the wagon together while their respective pups, Rusty and Reagan, take walks. But yesterday, all four kiddos (Gage & Ainsley are twins 3 months younger than Keegan) got together in Lainey’s backyard. As you can see on Lainey’s blog and Gage and Ainsley’s blog, a good time was had by all….even if it wasn’t all necessarily together. At this age, they tend to play around rather than with each other. Still, we had a great time.
In true transplant fashion, Keegan developed a runny nose and lots of sneezing today after his afternoon of fun yesterday. I know in my mind that it is the windstorm of cottonwood snowing outside our house that is causing the runny nose. Everyone in our neighborhood is feeling the effects of those beautiful but allergy-inducing trees. Our front yards have more “snow” from the cottonwoods right now than we get real snow in the winter. Still, the transplant mama in me can’t help but worry that one afternoon of playing to induce some normalcy in his life didn’t result in an infection. I have been trying to politely ignore God’s urging to relax all day long, but it is engrained and difficult to do.
Since the last post, Keegan has busted his g-tube connections open overnight twice and thrown up once in the middle of the night. The last incident occurred during a two-day bout of not processing his feeds very well, but that seems to have resolved at the moment. Then last night, he had a transient intussusception around 11pm. An intussusception is where the intestines telescope over each other. In healthy individuals, the intestines get stuck on top of each other, and medical assistance is needed to remedy the situation. This is a very, very painful condition. Keegan, as we know, does not have healthy intestines. His are very thin, and we have literally watched him via CT scan have an intussusception and retract on his own, thus the “transient” part of it. His intestines are thin enough that they “slide” over each other and back every now and then, but it is still very painful. This is what we assume happened when he passed out on me in Boston two weeks before we were to go home. We just have to support him through it and pray that he comes out of it on his own. Still, each instance is heart-wrenching and more than a child his age should have to endure.
The dentist last week went very well considering Keegan’s issues. He has 18 of his 20 baby teeth. Now we just have to work on getting him to use them to eat! No cavities, and the doctor even removed the iron stains from his bottom teeth from our misplaced efforts to raise his hemoglobin for 18 months before starting shots to help. We really liked the dentist we saw (thanks Dr. Barnes), and we’ll be back every 6 months from now on. Keegan wasn’t as accomodating with the new dentist as our other heart-friend, Karis, but I was very relieved at the accomodations made by the office for an immunosuppressed child who doesn’t want to sit still often!
Today, I had a very productive meeting with cardiology at Children’s here in Dallas to discuss the communication breakdowns that affected Keegan during the fall and winter. I have been asked to consult with the hospital to address this matter on an institutional level, and I am very hopeful and encouraged that our work will benefit many children with complex care. We’ll be sure to keep you updated as this progresses.
Please continue to pray for Keegan’s eating, as it is not progressing at home. Tomorrow, he will be professionally evaluated at Baylor for inclusion in their feeding therapy program. We are desperate to help Keegan progress orally and are praying for a reduction in his daytime g-tube feedings soon. Please also continue to pray for our friend, little Miss Avery and her family. Paul has endured more than his fair share of hardship since his spinal surgery almost two weeks ago, and Avery’s health is as delicate as ever. Please lift this amazing family up in prayer. They remain steadfast in their faith, despite how weary they grow. Thank you so much for your support. We will be getting started on several new COTA fundraising projects soon, so stay tuned. More pictures and video soon also! Don’t forget to click on Lainey and Gage & Ainsley’s websites above to see recent pics of Keegan! Thanks again.