Day Ten Post-Norwood - Sunday, December 14, 2008

"I will say
of the LORD,
"He is my refuge and my fortress,
my God, in whom I trust."
Psalm 91:2

HAPPY 35th ANNIVERSARY MOM AND DAD!

Yesterday we enjoyed a trip back to Orangeville to celebrate my parents' 35th wedding anniversary (which is officially today.) We had an enjoyable time and it was great to get together with the whole family again!
Although it was difficult to leave Tyson in the morning, it was just as difficult to leave Orangeville again at night. Our hearts are being torn in many directions. When we saw Tyson in the morning, he had just been suctioned, and he was very upset and working extremely hard to breathe. (As you know, he was extubated on Friday evening and has been working very hard to breathe ever since.) They told us in the morning that if he continued to work that hard, they might have to put him on CPAP. CPAP still allows Tyson to do all the breathing on his own but it gives him an extra "whoof" during each breath. It's kind of like sticking your head outside a bus while it's moving....!

Anyway, it was difficult to leave Tyson in the morning, especially considering how hard his chest was caving in and out as he took each breath. But as we neared Orangeville my feelings were very "up and down" as we got closer to my other children but farther and farther away from Tyson. Then as we said good-bye to the other three children at bedtime Saturday night, I cried again.....the emotions are so hard! I feel like I am riding a roller coaster all the time.....it was so hard to say good-bye to my other children but my heart still tugs at Tyson and being there for him too. I feel like I need to be two places at once, and that is why we are SO THANKFUL for my parents and the dedication they have to our other children during this difficult time. It is also good that Brian can be there for them during the week and I can focus my attention on being with Tyson. As much as I miss my other three, I know that they are in good hands and they all seem to be coping very well.
When we visited Tyson again on Saturday night, he was on CPAP because there had suffered a slight lung collapse in his left lung. (not even the lung we were concerned about in the first place!) He was breathing peacefully on CPAP and as long as he does well and his saturations stay constant, he will not likely need to be re-intubated. The nurse says that many children need to be on CPAP after being extubated and even 35% of children need to be re-intubated.

This morning Tyson was still breathing very comfortably. There doesn't seem to be talk about re-intubation (*phew*) because he is doing so well on CPAP (according to the nurse he is 100% better than last night.) (And yes, I got to hold him! That felt sooooo good!) This afternoon after church we saw him again and the nurse mentioned that he had a rough afternoon because he is very annoyed with the CPAP in his nose. The plan is to take off the CPAP sometime during the night and put him back in the head box to see if calms down. They also gave him a small dose of a sedative to calm him down. (Where did he get his temper from?)

Good news about the x-rays of his chest! The x-rays from Saturday morning showed a slight collapse in the upper probe of his left lung....but the x-rays from Sunday morning show an improvement in the amount of fluid in the lungs, and the left lung is re-inflating as a result of the CPAP. So it looks like the CPAP is doing its job and his lung should be repaired in no time. As long as Tyson can expel the extra fluids, he will continue to move forward. We pray that he can learn to breathe deeply so he can be off CPAP soon, and that he will continue to cough and expel the secretions in his chest and lungs.

As far as the concern about his right lung, it looks like those fluids have "magically" disappeared! His right lung now looks healthier than his left, and although there are still small amounts of fluid on either side, he seems to be doing well and the fluids are definitely decreasing. Tyson is also receiving regular physical therapy where they train the lung to loosen the fluids so he can cough more. It involves tapping, shaking and massaging the lungs to loosen things up. From the looks of Sunday morning's x-ray, these things appear to be improving the amount of fluid building up. Reasons to praise the Lord for good progress!

Tyson has also been taken off of morphine by IV but they have been giving him small amounts of morphine (or a form of morphine) directly into his NG tube (feeding tube - NG tube is nasogastric tube.) The blood pressure medication he had on IV has also been discontinued and is being given by NG tube too (called captopril). These are all steps to making it more possible for him to go to a Step Down room. The less IVs he has, the better.

We will keep posting.

Brian, Mel and Tyson