Surgery Update

Alex had surgery this morning to replace his port and pull his PICC line. The surgery went extremely well. A side note here to explain why we love this hospital and these doctors so much. Alex's favorite anesthesiologist is on pain service this week.  When he rounded on Tuesday we told him Alex had surgery today to replace his port. He knows he is our favorite and understands Alex's anxiety. He put himself on the schedule this morning to do Alex's case to help him feel better about it. Then left the OR to continue to round on pain service.

The great news is we are getting really close to discharge. It could be anytime over the next few days, While we are not back to baseline we are at a point where he is stable enough that I can care for him at home. We will continue to try and get him back to baseline as he improves from the two surgeries and pancreatitis. The only issue we have dealt with today is an extremely high heart rate. His Heart rate has stayed between 120 and 170 all day. We are not sure if it is from anesthesia or pain. We are hoping it looks better tomorrow because we definitely won't be sent home with a HR like that.

Thank you for your continued thoughts and prayers.
Ali

Making Progress

The last couple days have been pretty slow. We have tried to give Alex a break and not make too many changes. His GI motility appears to be returning to his "normal". Although we have not attempted to feed because he is still having pain and nausea from the pancreatitis.

The plan is to go to surgery on Thursday Morning to replace his port. Assuming he does okay and we have no further set backs, I am hoping we can be discharged on Friday or Saturday.

We had a nice Christmas. Maddy and Alex enjoyed opening their gifts. We spent time with Mimi and PopPop and just had a laid back day.

Thank you for your continued prayers and support.

Ali

PS- Please keep Maddy in your thoughts and prayers. It is really hard for her to not have Mommy home. This has been a hard three weeks for her with lots of change and uncertainty.

To the PICU and Back

What a crazy 48 hours this has been! Shortly after I updated on Friday our nurse came in and sat down and said, "I have bad news". I had no idea what to expect. She let me know that the decision had been made to move Alex down to the ICU because of the level of nursing care he needed/number of IV medications he is on. I talked to the charge nurse, the nurse manager on the floor and begged and pleaded in every way I could to keep him on the floor. The nurses, charge nurses, care partners and secretaries up here have become like family. I will just say that I didn't cry alone.  When we got down to PICU the charge nurse and nurse manager down there came and spoke to me as well. They assured me that the ICU was the correct placement at that time. For those of you that are wondering, he was on a Fentanyl PCA pump, a Ketamine drip, an octreotide drip, merepenum, micafungin, gentamycin, as well as 6 other IV meds. He also has all of his meds through his tube. We were draining both G and J tube. Anyways, you get the picture. His care is A LOT right now. We spent Friday night in the ICU and our hope was to get upstairs sometime today.

GI made the first change yesterday and stopped the octreotide because his lipase continues to climb (almost 1800). We saw Infectious disease yesterday and they wrote to stop antibiotics as of 6 AM this morning because we have completed our 14 day course.  The biggest changes came with pain team. We were not getting adequate pain coverage with the drips any longer. we decided to stop both the Fentanyl PCA  and Ketamine and try something different. Because we were able to make those changes yesterday, we actually got up to our floor again last night. We are in a pretty small room, but the sweet charge nurse just came in to let me know that our old room is opening back up and they will move us back to "our" room once it is cleaned. Did I mention how awesome this unit is?

Where we are today...We are still fighting the pain, but he is doing okay. Overall, he feels kind of yucky. His motility is back to his baseline as far as we can tell, but it is hard to say because we cannot attempt feeds with the pancreatitis.

We are happy to see Mimi and PopPop who are flying in in a few hours. We are happy to be back in a regular room. We are so grateful for our friends and family who have supported us in so many ways during this hard time.

We want to wish everyone a Merry Christmas. Our prayer is that you find joy this season know where you are or what circumstances you are facing.

Ali