We’ve all been home together for a week! And what a week it has been!
We’ve been doing 4 respiratory treatments per twin per day. That includes 20 minutes on the vibrating vest, followed by cough assist, and suction. It has been going well, but it is time consuming. It takes roughly an hour each time, comprising nearly 4 hours each day. As of tomorrow, we’re transitioning back to 2 times per day, because they are doing so well. Twice per day will remain part of our “healthy” daily routine. I think they will welcome the reduction!
Landon’s PICC line is out! That wasn’t too hard to handle as a caretaker. We’re still glad it is gone though, because cuddling is much easier without it!
Other big changes:
Both boys are now on 3.25:1 ratio of ketogenic diet. That’s slightly “stronger” than the 3:1 ratio we started with. They have handled it well. One of the reasons for this increase is it was time to wean them off of Sabril. We would have loved to have weaned off of it sooner, but we’ve had trouble finding something else that helps control their infantile spasms. Fortunately, the ketogenic diet is doing its job, and we’re thrilled to be able to reduce meds.
New med plan:
Ketogenic diet at 3.25:1
Keppra (Landon only)
I can tell a difference in the boys as they are coming off of Sabril. Landon has gone from completely silent and agreeable, mostly sleepy, to much more alert, and responsive. This week we’ve seen him cry when his tummy was hurting, cry to be picked up, smile and coo a lot and loudly, and LOOK at a light up toy that projects on to his ceiling.
Other big changes – we’re running out of room again! We’re going to work on the boys beds, and make some changes and storage options. We still have some very important positioning equipment coming, and it is once again time to reorganize.
We’re incredibly thankful to be home, and amazed to think that only two weeks ago, Landon was coming off of a vent and chest tube, still had one looming blood transfusion and I caught a doctor whisper around a corner to a nurse “I’m very worried about Landon”.