Dearly Departed Drawings ~ Kole {day 330}

June 15, 2008

"We just want to thank God today, Father's day, for blessing our lives with Kole. 

Kole had a great night last night and all of his CPAPs (where they take him off the ventilator for an hour or two) are going well. The doctor decided to take him off the sedation this morning, which is AWESOME news. This means they are ready for Kole to breathe on his own. The x-ray he had this morning didn't show much change, so the tumor hasn't gone down much yet, but his first round of chemo actually isn't done yet, it takes 24 hours, so it should be done in a few hours. They said as soon as the tumor starts to shrink, the left lung shouldn't be partially collapsed anymore. Right now they asked us to leave the room, because they are taking Kole off the ventilator, praise God. Worst case scenario, he will have to get the breathing tube put back in. If he does well, though, he will actually get moved out of PICU (Praise God) and down into the hemonc ward, a "real room". Now that he is alert, he is really confused and fighting to get up. He was crying to us earlier, and we feel so bad, because we figure he is wondering why we don't pick him up and help him. He is restrained at this time, with a giant "airbox" over him filled with oxygen. We will keep you updated to any further changes.

Thank you from the bottom of our hearts, your undying support and 

messages help us get through each minute.

Kole is doing very well being off the ventilator. All of his vitals are strong without any help whatsoever. We asked when we will be able to hold him, just getting thisclose to him and not being able to pick him up is killing me. They said as soon as his arterial line is out, which will be by tomorrow hopefully. His catheter should come out this evening, and we will go back to diapers! The doctor said things look good, and he should soon be downgraded, either back to the intermediate care unit or straight over to the hemonc ward, depending upon how hemonc feels about him still having the chest tube in to drain his lung. They are tripling-up on his chemo off the bat, they started with a 24 hr drip yesterday, which he finished, then they hung another 24 hr drip today. Also they gave an IV chemo therapy, and will finish with a third at some point. Then he shouldn't get any more chemo for at least 10 days. They said it will be a couple weeks till we can possibly bring him home, and then we will have to commute to return for therapies, and 3 or 4 months till the tumor is reduced to the right size for removal. For the long haul, it looks like about a year to a year and a half of total treatment. Thank you for all of your prayers, messages, and support. Kole is calling for ma-ma.

Well things are still pretty good. He is still in the PICU, catheter is still in (frown), chest tube is still in (frown), and arterial line is still in (frown), but he is mostly alert and trying to communicate with us if not for the terrible sore, raspy throat he has due to the ventilator irritation. They want to observe him overnight and will decide tomorrow I guess if he can be moved to PIMCU or hemonc. I didn't see the doctor all evening and I think he is the one who makes the call. They just had to give him something to calm him down a few minutes ago because he was getting kind of rowdy. When he does that, his heart rate goes sky-high and his blood saturation drops, so they want him as calm as possible. We tried to go out for a fathers day meal, but found it hard to conversate or have a good time. We are hoping that they will give Kole some more nourishment soon, it seems so long in between times he is allowed to eat. They took him off his blood pressure medication this evening, which is good. Thank you for all your prayers and support.

It was REALLY wonderful to see all of you who came to visit today and

thank you immensely for everything. "

Removed the grid today and worked upside down for a bit, while I like the constraints of the grid to improve accuracy it also gets in the way of my eye.  Hoping to have a surprise for everyone  following Koles story on the blog tomorrow.  In our house my girls are about to awake from nap and I have a Christmas craft ready for them.  Sometimes we take our children for granted, we think we have time - but what if we don't?