Tuesday, April 17, 2012


Luke struggled a little more than yesterday wearing his cap for his nap today, but still made it a full hour! Not liking the wheezing that went on today, but still pleased that we're continuing to move forward. Can't wait to hear what the pulmonologist and the nutritionist have to say tomorrow!

Sunday, April 15, 2012

Sleep Study

Approx 3 am

After hours of five minutes on, 15-30 off with cap, Luke finally seems to have hit a stride around 1:45. He's had the cap on since then with several very brief times of wakefulness, pulling the cap off, then me getting it back on. The plan is to take the cap off at 3:00 and let him sleep the rest of the night without it. While I don't think we've done well enough to warrant decanulation right now, Luke has done far better than I expected. I think there's a light at the end of this tunnel down there!

Thursday, April 12, 2012


Luke is doing a little better today with the help of some extra breathing treatments. Fever's stayed away since Tylenol last night. He finally fell asleep a few minutes ago and is wearing the cap. His breathing is a little less labored than yesterday. Thank you for your prayers, maybe we have a shot at a sleep study on Saturday after all.

Wednesday, April 11, 2012

Wednesday (prayers please)

Luke's fever responded to Tylenol, but he's still not feeling 100%. o2 sats are going up and down some, and his heart rate continues to be a bit elevated. Giving a breathing treatment with the cap one was a nightmare. We sure appreciate your continued prayers. We are resting in God's mercy and infinite grace. I just wish I knew what his plan is for that little boy this summer...


Well, looks like Luke is getting sick. Sneezing, runny nose, and a fever. He's not tolerating his cap well awake or asleep. I don't understand why this is happening, and I don't have high hopes for making the sleep study on Saturday. Delaying the sleep study means we're delaying decanulation indefinitely. We need God to intervene or provide comfort in our disappointment.

Tuesday, April 10, 2012


Approx 4:30 pm
Luke slept with his cap on for his nap for about 15 minutes. His sats and heart rate didn't really change for when he slept with the cap off, which is good. But his breathing was still very noisy and labored, which is concerning. Possible and probable that he's experiencing some swelling in his airway, making it more difficult to breathe with the cap on. Hoping tomorrow is better because he can't pass a sleep study that way. Relying on God, who is the only one who can get Luke to sleep comfortably with the cap on at this point.
Approx 9:30 am
Neither Luke nor I really slept well last night, but we got through it. Got in another breathing treatment with the mask and the cap while he was playing with the iPad. Luke's wearing his cap this morning, although he's been taking it off quite a bit. I really don't care if Luke has the iPad and I have to watch Elmo's World all day if it means success with the cap this week. Some other parent tell me that's okay. Anxious to see how he does at nap time. Saturday's Sleep Study is coming so quickly.

Monday, April 9, 2012

Monday, April 9th

Approx 8:30 pm
Home now. First steroid breathing treatment through the nose and mouth took both David and me plus the iPad, but was a success. Luke got out of surgery at 4:00 and started wearing his cap again by 6:00, fastest that's happened to date . hope is sneaking in that he'll be sleeping with the cap by tomorrow . we'll see ...
Approx 4:45 pm
Just talked to the doctor. Luke is out of surgery and we're waiting for him to wake up. Took an hour to get an IV. Doc cut out granulation and floppy tissue. Gave us a good prognosis. Doc still thinks Luke will be decanulated this year some time.
Approx 2:30 pm
They just took him back to theOR. It's been awhile since they let him have any fluids, so we're hoping that getting an IV won't be a problem. Shouldn't be a long procedure once they get an IV line.
Approx 12:30 pm
We're still in pre op . There's still one kid ahead of Luke . Waiting on the Lord .
Approx 9:30 am
Headed to the hospital soon. Although it means getting home later, it's nice to sit and drink my coffee at home on a surgery day for a change. We'll keep everyone updated as the day goes on. Pray that we can remove a bunch of tissue (to make breathing easier for Luke) and for the steroids to keep the regrowth away.