Happy Thanksgiving!

Jen, Rob, Mark and Gantt at UNC Hospital's Thanksgiving Lunch

With Brett still in the hospital on Thanksgiving Day, we attended a lunch provided by UNC and served by hospital volunteers. It was so nice of them to give of their time to give families of patients a good experience and food for Thanksgiving. My mom (GG) spent the rest of the day and night with Brett and let Rob, me, Mark and Gantt go home and spend the day together. What a beautiful day it was in Wake Forest, NC! We went outside for a bike ride/stroll, and did some other fun outside activities. Later it was Waffle House for dinner! We enjoyed our time, knowing Brett was well-taken-care-of by his GG. She left to go home this morning and hopefully have a fun weekend at the lake with Dad and their friends. She deserves it!

Brett on Thanksgiving Day

As you can see from the photo, Brett is feeling much, much better. He is pretty much back to his old self behaviorally. We love to see all those gummy smiles! Speaking of gummy smiles, Gantt's is about to become a one-tooth smile - he is cutting his first tooth on the bottom!

Gantt on our stroll

Mark playing with his water guns

Our backyard on Thanksgiving Day - beautiful blue sky

Drawing blood.....

Well it is 1 AM on Thanksgiving morning and the nurses are having to draw blood.  It is not the best time for us, but it has to be done 30 minutes after his antibiotics run.  It is important for them to make sure the "levels" are right.  I feel for him so much, but I am glad that I am here to help comfort him and get him back to sleep.

-- Rob

Breathing on His Own

Brett has now been breathing on his own for almost 24 hours!! He has been moved to a room on the 5th floor. Got a negative blood culture from yesterday, but still need a few more negatives to be sure whether the broviac is not infected. We're so glad to be moved to a regular floor, and if we have to spend Thanksgiving here, at least we have a few "Creature comforts" and Brett should be able to rest better too. Plus, the nurses upstairs know him and us and they know CF better than the critical care nurses in the PICU. Happy Thanksgiving Everybody!

Good News and Bad News

The Good News: Brett's viral culture came back negative, which mean he doesn't have any type of influenza or any other viral illness. Because of that he has been taken off contact and droplet precautions, which means we don't have to wear the hot robes and masks anymore. The other good news is that he has been weaned down from the 5 liters of humidified oxygen to 3 liters at around 35% I think. The plan this afternoon is supposed to be to try to put him on a regular oxygen flow at 2 liters. If he tolerates that well without having to work too hard to breathe, we should be able to move to a regular room tomorrow after 4 nights in the PICU.

The Bad News: Brett's broviac line blood culture was positive again for bacteria. This points toward a little more evidence that the central line may be infected. If there are a few more positives in the next few days, he will probably have the line removed. If a few more negatives show up, then we'll probably keep it. The broviac was not necessarily the source of the infection (in fact, the assumption right now is that it somehow assimilated into his blood from his gut) but since it is in the blood now, we have to make sure the line is free of infection. If it is infected, there is no other choice but to remove it. If it continues to appear as though his gut is somehow leaking bacteria into the rest of his body, we may put him on some sort of prophylactic antibiotic to prevent that from happening again. At this point, though, it is all sort of speculation - if this, then that. We'll keep you posted on the progress at that point.

Brett and I did get a good bit more sleep last night once he was able to be fed and have a full tummy. Excited though to be possibly moving to the floor tomorrow.

Well, the GI study was finally done at around 3:00 this afternoon. It showed that the gtube was in place correctly, and that there is no intestinal blockage. Yay! We didn't think there was, but they did want to make sure. The last blood culture showed negative for the bateria. If there are a few more negatives, then that is good. If there are any other positives, it might mean the broviac central line is infected and needs to come out. The bacteria has not actually been identified like I thought before. What is known is the type of bacteria, and it's a gut bacteria. It will take a few days to know for sure exactly what it is. But I bet it's the same stuff as last time. So, no matter what happens with the cultures in the next few days, the IV antibiotics course will not change. The only thing that remains to be seen is whether the broviac is infected, and if so, we'll take it out and try to get a PICC line in or some other temporary access to finish the course of antibiotics. This should be a shorter course than last time's 27 days since it is not a lung infection. However, we will still be here in the hospital about 7 more days. Still hoping to move to the floor in the next few days.

For the most part, a sleepless night for Brett and me. He is doing ok but hasn't been on his feeds since we got to the emergency room Saturday afternoon about 4pm. He is normally on a continuous feed. That's a long time not to be fed, and he's very hungry. The doctors want an upper GI study done before we feed through the tube again. So last night I could give Brett baby food up until midnight. I gave him as much as he would eat because it would still be a long time before the study. He woke up about every 20 minutes and cried. Tylenol did help him settle for a couple of hours, then he started again. The recliner chair I am trying to sleep in is very creaky. Many times I would get up, hold the paci in until he was calmed down, only to try to get back in my chair and it creaked and woke him up to start crying again. Needless to say, we're both pretty beat. Found out that they can't get him in for the study until 1:30 this afternoon. I sure hope everything is OK so we can start feeds again. More on that later this afternoon!