Home at Last

We made it home today around 6:30pm. Took us almost 2 hours with all the darkness, rain, and traffic. But what's most important is that we made it safely and we're all home together again!!

Answers and Plans

So Brett got to meet the UNC Tarheels Basketball Team this week! When they stopped by we got some pics as well as had them sign a poster. Here's Brett with his poster.

This is our awesome new room! It is so big and it is in the corner of the 5th floor. Hardly anyone walks down the hallway so it is much quieter than the previous room (and MUCH quieter than the PICU!)

As for Brett's condition - he is feeling much better, and pretty much back to his normal smily self. I know he can't wait to be back home with his brothers. The docs pretty much decided (based on the bacteria that finally grew from the culture) that the infection DID originate from his broviac central catheter. Therefore, the central line must be removed. However, we can continue to use it to finish out the round of IV antibiotics first. Despite the trouble breathing (brought on by the infection) that landed us in intensive care, his lungs are in good shape. Tomorrow (Monday the 30th) makes 7 days of antibiotics since a negative-for-bacteria blood culture, so we are going to go 14 more days after that (IVs that we will administer at home) just to make sure his lungs are in the best possible condition for when he gets the line out, because he'll be going under anesthesia for that. Chances are he'll be getting a bronchoscopy as well, but Rob and I still have yet to make our final decision on that. The procedure to remove the line will probably happen the week before Christmas. There are no plans to replace it. The good thing is that it will be one less thing we have to worry about and take care of at home. If he were to need another line in the future, he would just get another broviac or PICC at that time. As for being discharged, we are hoping it happens tomorrow.

Some pics with the team

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!

I hate to post this update, but we are back in the hospital again! Things were going well, and Brett's health was declared the best it has ever been in his life!! After the last round of IV antibiotics (one week in the hospital and 3 more weeks at home), he continued to grow and gain weight like a champ. He has had a few minor issues, but none that have negatively impacted his growth or his lung health. We all have had our seasonal flu shots, and both twins have had the H1N1 shot and boosters since they are high-risk. Brett and Gantt have both been approved for and have received one Synagis shot (for RSV). They will get one shot every month throughout RSV season.

This past Tuesday was our last clinic visit at the UNC Pediatric CF Clinic. He looked and acted great that day! They said we needed to come back once in December, then if everything was still good, he wouldn't have to come back for 3 more months! However, Wednesday evening, Brett began to develop some respiratory distress. He mainly just started crying a lot and we thought it could be gas, so we vented his g-tube and gave him some mylicon. Throughout the night he began to breathe very rapidly and very shallow. We weathered the night, then went to our local pediatrician the next morning. He got an albuterol treatment there at the office that helped him breathe a little more normally, and there did not seem to be any obvious problem. They did some blood tests and the white blood cell count was great. Once we unplugged his feed, he got happy and smily again, so after our docs talking with his UNC pulmonoligists and us talking to the pulmonologist as well, we all decided just to wait and see - that maybe he was just having trouble with his feeds or his belly hurt for some reason. I did get an order for a chest x-ray if I wanted to have it done here in Wake Forest I could. Well, Saturday came around and he still was not feeling any better. He had not smiled in a few days, and those of you who know Brett know that despite all the rough times he's been through, he's normally still a very happy baby. This concerned Rob and me, as well as his increasingly troubled breathing. The pediatric pulmonologist on call Saturday advised us to bring him on in to the emergency room. That way if it were a simple g-tube problem, it could possibly get fixed, and if it were something worse, then at least the doctors would be able to see him and treat him.

Brett and I got to the ER about 4 in the afternoon. His breathing was rapid and shallow, about 80 respirations per minute. They could tell by his respiratory distress and his demeanor - lethargic, crying, and his low-grade fever, that he was sick, so they went ahead and told me he would be admitted. They took cultures, but went ahead and started antibiotics just in case because the cultures take a few days to see results. As usual, he went for his chest x-rays and abdomen x-rays. The good news was - as they had said his lungs sounded good - the lungs looked clear. The x-ray was even better than last time he was here in the hospital. They also said it could very well be viral. His flu test was negative, but it is possible that even the common cold could produce this kind of response in his already immunocompromised body. However, no one else in the house is sick.

As we were having these discussions, Brett's breathing continued to worsen. He began to breathe 95 times a minute, and his oxygen saturation went into the 80s. He was quickly put on a .5 liter oxygen flow and hooked up to monitors for his heart rate. His heart rate was climbing above 225! It was a little scary there for awhile. The oxygen itself was not helping his saturation all that much, so he had a treatment of albuterol, which helped instantly. As soon as he started breathing the medication, his saturation went back up to 97 or above. At that point, the doctors began talking to me about putting him in the Pediatric Intensive Care Unit (instead of the peds floor), for at least one night, for closer observation. His oxygen was needing to be turned up higher and higher for his breathing efforts to be effective. By the time all was said and done, he had gone from that .5 liter flow to a 2 liter flow! So between that and the high heart rate and modest fever, ICU was the best choice for him. At that point we were just waiting and the ER was noisy and he was crying and couldn't calm down. Once we got a room in the PICU and got him moved and in a bed with his boppy pillow and his zaky (fake bean-bag hand), he calmed down pretty nicely and was able to sleep some.

Rob spent the night while I went home to take care of the other boys. Rob's dad was in town to sit with the boys while they slept and Rob and I worked out getting all our stuff up here. My parents arrived around noon to keep Mark and Gantt while I drove out to relieve Rob. Now I am here with Brett "until further notice!" Despite spending so much time at this hospital, it was actually our first time to their ER and it's our first time in the PICU. It is a bit like the NICU in that only 2 people can visit at once and we are not supposed to eat in here, etc. One parent can stay the night, though, whereas in the NICU you can't stay. We do have our own private room, and there is a TV, but there is not a bathroom or a shower. You have to go all the way out of the unit to go to the bathroom. Which is strange to me, because even in the NICU there were restrooms inside the unit. If I want to take a shower in the morning, they said someone will take me up to the NICU and I can shower there. Additionally, Brett is on contact precautions which basically means we have to wear these yellow gowns which are pretty much like wearing an electric blanket they're so hot. It's kind of good that everyone else has to wear them too, though, so maybe less mixing of germs they might pick up from other patients. Also we aren't allowed to use our cell phones in the unit. However, feel free to text me or to e-mail me - I can do that as well as use the Internet here in the room.

For today, the major news is that there is bacteria in his blood again, and it's the same bacteria that he keeps having over and over, gut bacteria klebsiella and enterobacter. (I'm pretty sure this is the case but I will correct if I am wrong). Right now he is getting 2 antibiotics intravenously, the same 2 he had during the last round, cefepine and tobramycin. From what I understand, we need to figure out why/how he keeps having this. The doctors are trying to decide if he needs a new broviac (the name of his central line), and whether the broviac he has is infected or not. This discussion and decision will probably take place over the next few days, so we may not have any updates on that anytime soon. For now, the next goal is for him to slow his breathing and it still be effective so he is not having to have so much assistance breathing. The last thing we want is to move him upstairs then have to come back if he gets in too much distress again. The nurse told me just now she doesn't think they have any open beds anyway. The hope is that he might be able to accomplish this by sometime tomorrow, and if there is an open bed, he could move.

Now that it's flu season, siblings are not allowed to visit at all, even on the floor. While I agree with this rule because I don't want my child at risk for getting more sick, it's hard on the other hand for our family. Even for "shift changes" the parent that is staying here would have to go out to meet the parent coming in if the other kids are with us. They can't come upstairs at all. The other 2 times we've been admitted, it's been nice to at least be able to spend time together having a take-out meal or sitting around playing video games and such.

My mom will be here at least until Thursday, Thanksgiving morning. I don't see that we will be out of the hospital by then, but we will cross that bridge when we get to it. Rob and I will switch out when it comes to staying overnight with Brett, but not necessarily every other night, just whatever works out best with what the family has going on and what Rob's work responsibilities demand, which is different every week. If Brett goes to the floor, maybe my mom will stay so we can have a night at home together. Fortunately, Mark is out of school all week, so we don't have to worry about getting him there at 8am and doing homework, etc. He goes back next Monday.

Here are a few specifics you can pray about.

1. The doctors can figure out what is going on! Why he is having these problems with this same bacteria over and over, which aren't even CF-related lung bacteria. That they will be able to find out if the broviac is infected, and whether it is contributing to this problem or not.

2. The antibiotics work and blood cultures will soon come back negative and Brett starts to feel better

3. That Brett begins to breathe more effectively on his own with less effort. When he requires less oxygen and his saturations stay high, we can move out of ICU

4. The stress of our family being separated. Unless someone else stays, Rob and I are never home at the same time, and get zero time alone together. There are no family dinners and family fun nights. It is hard to be the one here at the hospital, but it is equally hard on the one at home. I am so grateful I get to be with my sick son. However, is also tough for me to not be with the other boys, especially Mark. Each day we are here, I feel it's another day that I am not able to spend with my other sons. And each day is priceless. Pray that Mark tolerates this hospital stay well while his world is not normal again.

A big thank you to our parents for helping us so much during these hard times, even though they live so far away. Especially my mom, who does SO much work taking care of the kids and house. It would be way way way harder without her help, and if it were someone besides GG doing it, it would be second-best.

And thank you all - near and far, old friends and new - for being concerned about us and interested in what is going on with our family and our sweet Brett. Thank you most of all for praying, and thank you for your texts - facebooks- emails & calls of encouragement. Thank you for the meals and childcare. And a BIG thank you to all our dependable Chick-fil-A team members who do their best to keep the store running so well while Rob is dealing with all this illness and family stress. We appreciate you ALL!