A Good Day

Alex playing his ds

Alex getting an ultrasound

W e had a really good day today. Alex slept in till I woke him at 9 to give him his shot. We had just gotten going when we were surprised to see a theraist at our door. The team had consulted occupational and physical therapy to come in since we have been here so long and Alex receives these therapies at home. I got a good 45 min to myself while Alex worked with the therapist. Alex's labs weren't great this morning with both his pancreas and liver numbers going up over night. Because of this they ordered another ultrasound to look at his liver and ducts to see if they can find a reason his pancreatitis will not abate this time.

Alex walked for the first time today although a little unsteady on his feet! He played games. He spent time with his favorite child life specialist decorating his room and he had music. So a good, but busy day. Right at 7:00 he asked to go to sleep and has been sleeping soundly since.

Hopefully, tomorrow is a nother day filled with good news!

Ali

New Line

Short update tonight...

Alex had his femoral line pulled today and a PICC line placed. He did pretty well with the surgery. He had his favorite anesthesiologist and woke up happy. We are watching for any possible complications, but so far we have not seen any. The plan is to continue to run antibiotics and follow labs for the next ten days. LAte next week we should be able to get to the OR to place his permanent port and then head home. We will leave him on TPN and work on feeds when we get him home.

Ali

Going Nowhere Fast!

Well it sure doesn't look like we will be exiting the building anytime soon. We have received some good news and some bad news over he past few days. In very good news Alex's pancreatic enzymes are finally trending down and his fever broke late on Friday afternoon. Because of these two occurences, Alex has been feeling better and has even been out of the bed and sitting on the couch some the past two days.

The problem with the fever is that unfortunately it was the re-addition of the third antibiotic that broke the fever which means that most likely he is still infected. Talks have continued as to whether or not to pull the line. The fact remains that there is no good option. The line could be infected in which case it needs to come out. But if we pull out the line we could dislodge the clot which could be dangerous. So the talks continue. To make matters worse the clot has not come down in size at all and Alex is having pretty significant pain at the line site.

The plan for now is to make a decision on Monday about the replacement of the line. Infectious Deisease has also decided that we need to do 2 more weeks of antibiotics to be sure we clear this infection before we move on to our permanent port. So it looks as though we will be inpatient for a while longer.

As I mentioned yesterday, we were so lucky to have incredible friends come spend a few days with us. Here are some pictures of Alex and one of his best buddies, Walker celebrating New Years.

Ali