Okay so here we are 10 days later and once again we are gearing up for discharge! I am praying that we make it home for longer this time! After a week of very little intervention or testing, there has been a last minute rush today to get things done before tomorrow. So after much deliberation and confusion over Alex's need for nighttime Oxygen over the last week, the final consensus is that he needs blood. He has been sitting just over transfusion level for the past two and a half weeks. he looks exhausted, is extremely pale and has been struggling to keep his oxygen saturations up. So although we were told all week we would not transfuse unless he dropped farther, their was a change of heart today.
The other problem we have been battling is Alex's distention and slow motility. For several years now we have known that Alex holds an unusual amount of gas in his GI tract. It doesn't come out and often causes an ileus or obstruction of sorts. We have never found a cause. Our GI came by today and decided to perform an unusual test on Alex's secretions from his Jtube to see if he has an overabundance of bacteria that can account for the gas. So after his transfusion tonight we will turn off feeds for 3 hours and perform this test.
Feeds are slowly creeping up. We are at 28 cc/hr. I am still hopeful that once he gets his blood his motility will pick up and we will be able to move a little quicker. We would love to get to full feeds by the end of the week as we are supposed to be camping with the cub scouts.
We have a quick turnaround as we head home for 10 days before we need to head back here for more outpatient appointments. I am hoping after that trip we will be able to enjoy some down time and not have to come back to Houston for a while.
I will update from home tomorrow.
PS- There is now an option to be notified by email when I update. If you are interested in being notified please filll out the "follow by email" box. I will give people a few updates to sign up, but then I will stop notifying by caringbridge.