not a good day

Friday night Luke began having confusion again. Saturday it continued but the pain medications were changed and it seemed a bit better by nighttime. He was out of bed, even walked to the bathroom twice (once in the middle of the night he tried to do it by himself... That earned him all 4 bedrails up in the bed). He seemed to be doing better. Then today he slept almost the entire day, increased his work of breathing, looked flushed, and had a temp tonight.

He just had a chest xray done and blood cultures to check for bacteria in his blood and port. His urine looked ok and did not have any bacteria in it (he still has the catheter in).

When surgery came to see him today they were concerned about him picking off the steri strips.. He is a picker... So he had new ones put on . They wanted his g tube clamped and not draining and to see how he did on clear liquids. Well after yesterday him screaming and yelling about wanting to drink the whole bottle (and not be limited to 50ml/ hour and it draining out his tube) today he drank 75 ml . He has had some diarrhea but as the surgeon said liquids move through by gravity but the gas in his belly actually takes work and movement of the intestines. Sometimes that causes belly discomfort when they are waking up.

But knowing Luke and watching him all day there is something wrong. His nurses here all agree this is very different from his normal.

Glen and the three other big kids went home yesterday after taking me to Target. I needed some healthy foods and I love they have a larger selection of frozen healthy foods. I was able to get food for the little girls and my mom for breakfast and some lunch items and then frozen things I can keep on the floor in the family kitchen. This helps a lot with eating better as well as eating cheaper!

so happy to be back on 7a

though I have to admit when I told him to show me how he feels this is the true picture

loving having family here

no bumbo seat.. no problem.. a box and some blankets work well!

Kyara working on simple machines with kinex builders.

Please pray for Luke that the doctors can figure out what is going on with him. Also pray that his breathing gets better and he doesn't have to go back to PICU for more respiratory support.