Finally Some Steps in The Right Direction

Overall today was a MUCH better day. It finally felt like way made some steps in the right direction. Alex had some faint bowel sounds today. His output from his G and J tubes was a fraction of what it had been and we had some other signs of gut motility. We still have a long way to go, but it was encouraging to see some progress no matter how small.

We are also continuing to decrease his pain meds each day. We have stopped his continuous drip of Fentanyl. He is still pushing the button to get fentanyl through his PCA pump, but we did lower the dose today. We also still have a ketamine drip going. We are hoping we can come of the Fentanyl PCA tomorrow.

Alex only has 2 days left of his IV antibiotics and he is doing great from the infection standpoint.

His blood sugars are stable today.

Really the only negative is his lipase continues to climb (Currently almost 1000, normal is less then 70) and we are walking a fine line between wanting to get motility going and trying not to send him into a serious bout of pancreatitis.

I have to brag on Cook Children's and the nurses. Our care has been exceptional. The last admission they made his nursing ration always 1:3. Because of the amount of care he is needing right now they have lowered his ratio to 1:2. This is amazing because this normally requires you to be in the ICU. They want us to have the comforts of a regular room without compromising his care. They have also kept our pool of nurses extremely small so the nurses are comfortable with his care and there is less chance of error. Today I was able to go downstairs and choose a few gifts for each kid that they will deliver to our room on Christmas Eve after Alex goes to sleep.

Thank you so much for all the thoughts and prayers.
Ali