Monday

Just got back from the doctor's appointments. ENT wants to do another broncoscopy to check Luke's airway to see why he won't tolerate capping his trach. We're scheduled for early Thursday morning. Everything else (cardiac) is great. I'll write a note soon. The trip up to Dallas (alone) went very smoothly. Thanks for your prayers.

Capping Progress Report

Hello friends and family. I wanted to give you an update on the progress Luke has made towards capping his trach.

Last time I wrote, it was with relief that there was no hard and fast deadline towards getting decanulated before the fall. David and worked hard at building up the gauze and tape on Luke’s PMV to make the transition smoother between PMV to cap. Even though there is no hard deadline. My (over-achiever?) brain still imposed a soft “if we can’t get it by mid-August, it’s not going to happen” deadline. So we pushed. I prayed fiercely every day multiple times that God would allow us to get Luke decanulated by the fall. I hung all my hopes and dreams on decanulation by fall.

As many of you more experienced parents know, kids go at their own pace. Sometimes pushing them too hard tends to get them to go the opposite direction. I pushed too hard. My days started revolving around how many pieces of tape and gauze I could put on his PMV. Resentment started building up (at no one/nothing) in particular whenever he’d have to take steps backwards or start with less resistance in the mornings. I remember one Wednesday night at church after giving Luke a breathing treatment, I could not get him to wear the PMV again. He held his breath and turned blue. When he did take in some air, he let it out crying at the top of his lungs. He struggled against me because I was holding his hands to keep him from ripping the thing off. I was mad at Luke for the first time ever: “Wasn’t he just being stubborn? Didn’t I have to win this battle in order to be a “good parent” and to teach him that he can’t manipulate me? I’m the parent! I’m in control!” But I wasn’t in control. There had to be a better way. So I took the PMV off. As Luke calmed down, I became more and more distraught. I held him and cried like a big ol’ baby in the church’s cry room.

It was a few days after that when I started to become resigned to the fact that we weren’t going to make this self-imposed mid-August deadline. It was a grudging resignation, and I was honest with God about that. In my search through blogs and chat rooms trying to find some help or ideas with an easier way to cap Luke’s trach, the Lord gently reminded me that this isn’t the end of the world. He showed me posts of other moms of kids who have been trached for years and years – and will probably never be decanulated. If they can do that, I really need to not be whining about another 9 months. A quote from a friend about God sometimes not being very interested in the end result of our prayers, but very interested in what we learn through the process, got me started thinking about what I need to be learning from this process instead of demanding that God heal Luke to my satisfaction and on my timeline. Another quote from a different friend reminded me that we lose a lot of fulfillment when we rush things. I admitted to God that I was rushing. I’ve never rushed something so intensely in all my life. So all of these things together helped me adjust my attitude. I was still very disappointed, but no longer resentful and much more peaceful about the situation.

With David in agreement, we dropped all the way back to the plain PMV with no gauze or tape. We started letting Luke drive this wagon (for good or for ill, as far as parenting goes). If he didn’t want to wear the PMV, we gave him a break. If he didn’t want to fall asleep with it on, we took it off until he fell asleep.

Then a pretty cool thing happened. I started noticing things about Luke that I had been too focused on the capping process to really appreciate. He was swallowing faster and easier during speech therapy. He started rolling on his own, and even spending time voluntarily on his tummy! He’s sitting up on his own for long minutes and enjoying it. He’s been encouraged to explore his voice by our friend Jay Trischitti (and of course us!). He’s now very proficient at saying “ya ya ya!” and getting better at “da da da” and “la la la”. He’s going to be crawling any day now, and he’s standing when you support him and encourage him to. He’s started to express his love for Mama, Daddy, and others with the sweet, sweet gesture of laying his head on your shoulder and then looking up and grinning at you. I was seeing these things, but was not fully appreciating them (or thanking God for them) as the miracles they really are.

So where are we now? Luke is just wearing the PMV (no gauze or tape) right now. Most of the time during the day, he’s been doing it without protest, though we still have our moments. Today and yesterday he fell asleep for his first nap with it on (he had regressed to not being able to fall asleep with it on). I’m starting to learn the difference between him telling me “Mom, I don’t really feel like doing this right now” – which I help him push through (usually), and “Mom I really AM NOT going to do this now!” – which I let him win those battles. As a family therapist, I worry that Luke is going to catch on and start making everything an “AM NOT” battle, but I guess we’ll cross that bridge if we get there.

Today I called Luke’s pulmonologist about making an appointment for the next visit, since were planning on waiting to see him for the capping trial. I explained to the nurse the road we’ve been down. She was very encouraging and told me we have been doing a good job pushing and backing off as necessary. She said that some kids just don’t like change very much, but as long as he’s still tolerating his PMV, there’s nothing physically/medically concerning about his resistance to the capping. We made the pulmonologist’s appointment for Oct 12. She told me that if Luke started tolerating his cap before then, that we can still call and schedule a capping trial. So even though it’s Sept 1, we might not have to give up yet. We will also visit the ENT surgeon on Sept 27. He also has the authority to decanulate Luke, so we may have another shot with him as well.

I want to thank you all for your prayers up to now for Luke’s progress towards decanulation. Please don’t stop praying. It would be just stupendous if he could be trach-free for the holidays (and beyond!). But please also pray for David and I, especially me, that we don’t push too hard again. It is very tempting to make another hard “rush” at the Sept 27 and Oct 12 dates. We need peace whatever happens. If God says “not now”, we need courage and stamina to do this trach thing another 7-9 months.

I am so thankful to you all. I wish I could invite all of you into our home to see how Luke is grown and how he’s progressed. He is such an amazing, loving, expressive little boy. Thanks be to God who is the maker and protector of Luke’s amazing little life. Thanks for your prayers and your wonderful encouragement.

Blessings,

Rachael, David, and Luke

Up, up and away!