The day started very early as we had to be at the hospital at 7:15am for the surgery to replace Luke’s G/J tube. After a bit of waiting, we went to the room where they were going to do the procedure. They were able to get the IV started on the second attempt. The procedure did not last very long and was successful in replacing the tube.
Sue took Luke home and I went to work for a few hours. We had feed Luke 3 times a day 80 ml per feeding until this past weekend when we stopped because he was sick. Today we started bolis feeding him again and he took three feedings of 60ml. Each day we will increase them by 5ml until we reach 80ml per feeding. Our goal is to get 4 feedings of 80ml each plus we feed him via his pump the balance of 1.1 litre..
Later in the day we had an appointment with Luke’s Pulmonologist. The doctor agreed to let us get Luke a Passy Muir valve. Yeah! This is the beginning of working toward removing the trach. A Passy Muir valve is a one way valve allowing him to breath in through the trach and out through the mouth. With a Passy Muir, Luke can make noise and maybe even talk. The doctor said that Lukes lungs did not sound completely clear. We told him about Luke being sick and the surgery this morning. The doctor wants us to return in a month and if Luke’s lungs sound clear then he will schedule a test to check Luke’s breathing. If Luke passes that test, then his trach can be removed. Please pray that Luke’s lungs will clear up and that he doesn’t get sick again.
On Thursday, Luke will be having an EEG. If all goes well and Luke does not have any seizures, then we hope to get him off of his antiseizure medicine, which would be awesome. Pray that he will sleep during the test and wont have any seizures. Pray that we will be able to get rid of the medicine.
I went back to the very beginning of the blog and read some of the early posts. I am amazed at how deeply it still touches my soul. I was amazed to see that in less then a day and a half, there were people in Ireland and Iraq praying for Luke. God is so amazing!
2 comments:
Praise the Lord!!! I have been wondering how the appts. went. We will indeed pray about the trach and Luke's lungs. Our Father is heaven is doing mighty things and even though sometimes it seems like small steps... God is indeed faithful and HE sees the whole picture! I am rejoicing over the great reports... and for the pasy muir (did I spell that right?). Please let Sue know that I miss her posting... (not that you are not great, Gordy!) I am praying when I wake in the night with Wesley (18 months) that Luke is sleeping peacefully and Lily too!! You all are so very special to us.
Your Ga Friends,
Billy, Teena,Michael, Mandi, Dakota, Alyssa, Wyatt & Wesley
Hallelujah! Wow, what great news...won't that be awesome to hear Luke talk again someday! I will be praying extra hard for that miracle. Glad to hear all is well after such a heavy weekend.
Colleen and Family
Des Moines, WA
Post a Comment