Saturday Morning Update

I apologize for not updating yesterday. I know how much you love my boy and want to know he is okay. Yesterday was extremely hard emotionally. We knew coming into this surgery that recovery would be tough, but we have definitely had some unexpected complications. No Matter how much you try and prepare it is still hard to live it. Alex is tired of hurting and feeling bad, not just for the last 9 days, but for the last 16 years. He feels like there is no hope of ever feeling good. Usually, I he (and I) are excellent at trying to focus on all the good, but yesterday’s was a day to feel the hard emotions and cry and yell. As a Mom, I wish so badly I could take away his pain physical and emotional, but all I can do is let him know that I hear him and I am here for him.

Medically...Nephrology has stepped out. Hematology is happy with the dosing of our blood thinner so they did not stop by either. Palliative care cam e by and checked on us. Alex met with his Clinical therapist and did some biofeedback.  Endocrine cam by and we decided to switch his steroid to what we use at home that he typically does better with.  They did not make any other changes. The hospitalist and I went through everything and discussed discharge criteria so we are all on the same page. Pain came up with a new plan to try and help him feel better while limiting narcotics. Unfortunately, the medication they wanted to use required an EKG and they needed a parameter to be under 450. Alex’s came back at 460 so they were asking cardiology to look at it, but we were not able to start the new medication yet. GI was the last to come by and we let him know that Alex was complaining of increased pain and  nausea, but not surgical pain. Dr. O tried to reassure Alex that even though he feels like it isn’t going to get better this is just a bump in the road and he will continue to improve, but it may be months before we see the full benefits of surgery. Based on Alex’s symptoms he did want to check another lipase (pancreatitis lab).

Last night when we started to give Alex his meds he became extremely nauseous and was retching (he can’t vomit). We had to skip about half of his night time meds. We did get him a little more comfortable and he slept through the night. He woke up this morning really nauseous and hurting again. His nurse let me know that his lipase is high and he likely has pancreatitis. We did minimal meds and he has been very quiet this morning. He doesn’t want to talk or move. He is just laying watching his iPad.

The original plan was for Bruce to bring Zoey to us today at least for the day, but possibly to stay. That plan is on hold for the moment. i am trying to get a sense from Alex of what he wants. When he has pancreatitis, he is extremely sensitive to smells and any smells make him very sick. I am worried that if Zoey smells at all he will do worse with her here. Had I known, I would have had Bruce give her a bath yesterday.

He may just bring her for a short visit and let me sit outside with Maddy for a few minutes. My girl and I need to hug each other!

More than anything Alex wants to go home to his bed, his space, his friends, our med schedule and the ability to distract himself. Please pray that we can come up with a plan to get us home Monday as expected.

Ali