Slow Progress

Hello Friends and Family

It’s been a little over a week since my last post, and our visit to Vent Clinic and Luke’s pulmonologist. I wanted to give a brief (as possible) update on how that went and where we’re headed now.
First of all, so many prayers were answered when we got to see Dr. Gelfand’s partner, Dr. Copenhaver. We have nothing against Dr. Gelfand, but have felt in the past that Dr. Copenhaver has a more optimistic and progressive style of practicing medicine. I was thrilled when I heard he was in vent clinic that day!
Luke had to get stuck several times to get enough blood for testing, but all his numbers came back just fine. His sodium was on the low end of normal 131 where the range is 130-140. I was okay with this number, because I had been a little worried that maybe the upped amount of sodium we give him each day was too much. Not the case. Everything else went smoothly, and we got to see Dr. Copenhaver.
He was pretty impressed with Luke’s progress on the modified PMV/cap. He kindly described the path that we’re on and the timing of Luke’s decanulation. He let us know that the August 1st deadline is not hard and fast. Summer lasts a long time in Texas, so as long as cold weather doesn’t come on freakishly fast, and we don’t have an early outbreak of RSV or flu season, or a wacky outbreak of something like Swine Flu, we should have all of August and into September to reach our goal. Nothing like adding on 4-6 weeks to our deadline to relieve some of the pressure. We need to go at Luke’s pace to work towards capping him completely. Once he is capped for a week straight, then we can call Our Children’s House and get Luke set up for a sleep study. I don’t know how long he’ll have to stay this time, but on the sleep study night, they will do half the night with him breathing through his trach, and half the night capped. In the morning, they will look over the results. If his sleep with the cap is comparable to his sleep without the cap, then they will move to the decision of decanulation. Everybody important will weigh in, and if everybody agrees, Luke can be decanulated right then and there.
So a week after vent clinic, where are we now? Unfortunately, we’ve been moving slower than either David or I would like, I think. It seems like Luke takes two steps forward, and then one step (or two or three steps) back. Luke has had some trouble with what seems to be allergies, which obviously makes it harder to breathe. Today he spent the entire morning just wearing the PMV with no gauze or tape. This afternoon, we’re slowly adding gauze and tape, and increasing the difficulty. We’ve had a few days where Luke has spent most of the day with the PMV completely taped. He still won’t tolerate the actual cap for very long, but the fact that he is tolerating it for even a few breaths is progress.
Meanwhile, we’re working Luke’s lungs out. He’s working pretty hard to breathe at times, but it’s like one of us increasing our cardio workouts. He’s getting stronger and stronger.
David and I sure hope to have Luke fully capped within the next few weeks. We obviously hope to be making the call to Our Children’s House by mid-August, but again, we’re forced to go at Luke’s pace. It’s so frustrating. I wish I could just explain to Luke and have him understand that if he works really hard at breathing and using his cap, we can stop trach care and suctioning forever. But he’s a baby, and so I’m forced to just plod along, taking two steps forward and one (or two or three) steps back.
Meanwhile, I think the allergies causing difficulty breathing, is making Luke scared of eating. He has thrown fits the last three times I’ve tried to feed him (speech therapist present or not) and has only swallowed successfully a handful of times. This is also frustrating.
Please continue to pray for us. Specifically, that we can make this deadline of having him capped and decanulated by the end of the summer. Pray that Luke’s breathing is eased, and that his anxiety is calmed when we use the PMV/cap. Pray for David and I that we can have stamina to finish this race, serenity to go at Luke’s pace and not to push him beyond what he can reasonably manage, and wisdom to push Luke when he needs it and back off when he needs a break.
Thanks for your continued prayers and words of encouragement.

Love,
Rachael, David, and Luke