Going Home Today!!!!

Brett is getting his first tooth! It is so cute. We are going home this afternoon after his successful trial off the oxyge. It has been quite a week. Based on our past experience with Brett, it seems that most hospital stays end up being 7-10 days in length, so I guess for the future hospitalizations we can kind of plan on that. See ya later!




Bye UNC!!! (for now, anyway!)

Always a Smile for the Camera

Brett is so used to being photographed that I think whenever some sort of camera/cell phone looking device gets held up to his face, he is trained to automatically turn on the charm! Today he's done a little better with coming off the oxygen. Right now (4:30 PM)we're doing a trial without it, and he's holding fairly steady at 95%! If he keeps this up, we can probably go home tomorrow!

Another Day at UNC

Brett during his liver ultrasound - watching Curious George

Yesterday Brett had a good day - not very eventful, except for a liver ultrasound that was done to check for any problems since his liver enzymes were elevated. Thankfully, the ultrasound was completely normal so there does not appear to be any blockage or any bloodflow moving in the wrong direction. The broviac line is working fine and we are using it to administer the IV antibiotics. The cultures we took last Thursday from his throat have only grown haemophilus influenzae (or H. flu), which, despite the name, is a bacteria, not a virus. This bacteria has been found in healthy children as well as children with CF. We are still waiting on his cultures from Monday's bronchoscopy to grow. Unless it is something way different than H flu, though, it won't change the course of treatment. Since the remaining IV course can be administered at home by Rob and me, the only thing that is keeping us here right now is Brett body's inability to keep his blood oxygen saturation up into a satisfactory range without the assistance of oxygen. He is on only a small amount of flow (.3 liters), but when he is weaned down further or turned off, the sats dip. The doctor today said that 90% while sleeping was OK with her, so I really hope we will be able to be discharged tomorrow - Thursday. As for now, just another day waiting around at the hospital! Here's some pics from yesterday.


Me and Brett on the way to radiology

Sunset view from the 5th floor at UNC

Finished with Surgery!

Brett in recovery

Brett's bronchoscopy and broviac placement was successful this afternoon, and he was able to be extubated before leaving the operating room, which is always a sigh of relief for us. He spent about an hour in recovery then was able to come back to the room. Although I haven't talked face to face with the pulmonologist yet, she left me a note saying that the lungs were very clear, so of course that is good news. They did some suctioning and some washes to get some cultures. So far, his cultures from Thursday afternoon at clinic have not grown anything. Also, he has continued to steadily gain weight every day he's been in the hospital! This is wonderful!!!

As for the broviac, they moved the procedure up to today because last night the IV in his foot failed as well, and there just weren't any more good veins to choose from to put in a new one. They decided to just leave him alone without an IV for the night and go ahead and get the permanent line placed today. We were very happy that this was decided, because the hand and foot IVs are very painful to put in, and when they fail it is very painful for Brett when the medicine is being put in. As for our hopes for a port, he is still just too little. However, since he is bigger than he was last July when they put the previous broviac in, they were able to place a larger catheter, which should be more stable and less apt to fail. This is his 3rd broviac line.

So for now he is sleeping soundly back in our room, and I expect the rest of the night to be uneventful. Thank you for checking in with us.



This is what the recovery room looks like on a holiday - empty!


Getting a chest x-ray to be sure the catheter is placed correctly

The View from the Room

Yesterday Brett's tests came back negative for flu and negative for RSV, so that's good, and we were able to come off contact precautions and droplet precautions - which means we could all stop wearing the masks and gowns and gloves. His IV was kind of limping along, almost not working, and finally quit working last night, so he had to get a new one, which ended up being inserted in his left foot. I am not completely sure whether his breathing is better or worse, because I am not there this weekend - my mom stayed with him so I could get some rest at home and see my other boys. We all got to go to church and to lunch this afternoon, which was nice. Today has been a good day for Brett. No definitive answer yet on whether Brett is big enough for a port. I have not talked to any surgeon face to face yet. I've heard yes, and I've also heard that they prefer them to be at least 10 kilograms, and Brett is only about 7.50. Therefore, it remains to be seen what kind of permanent line he will get; however, it will be in the next few days as we are running out of veins for the little peripheral catheter. I'm headed back up to the hospital in the morning and will hopefully have more information to post tomorrow afternoon.



The pictures are of the creative "view" outside our window. It's kind of nice since otherwise it would just be the tops of buildings!

Friday Night Update

The great news today is that Brett gained weight today even though he's sick. Today he weighed in at 16 pounds and 10 ounces. He has been in a great mood when he has been awake and still wanting to roll around and sit up and has interest in toys and watching movies on the computer. Tonight we got to do a video conference with Rob and Mark who were at home. Brett enjoyed that and started smiling and cooing when Mark did all his crazy stuff on the screen that he usually does at home. The only other news I have is that Brett's breathing has become even more labored today, despite still being on a half liter of oxygen. It's for this reason that the doctors are reluctant to put him under anesthesia to put in a more permanent central line. So he's started his course of antibiotics through the little IV in his hand, and will continue to use that over the weekend until his lung function can improve enough to handle the anesthesia. Unfortunately, that means it will be Monday or Tuesday at the earliest that a more permanent line can be put in, and several days after that is when we'll be able to come home. It will be a long weekend, but praying that it will be uneventful. Goodnight!

Friday Morning Update

Brett slept like a rock through the night since he was so completely wiped out from yesterday's events, and now he's back to his smiley self! It was actually around 8:30 this morning before anybody bothered us at all, which is kind of a miracle if you know anything about hospitals! We survived the inevitable morning battery of doctors and residents and nurses, and for Brett we also have respiratory therapists and physical therapists coming in about 7 times a day total. This morning he is in a good mood, although still fairly tired.

His peripheral IV in his hand was put in place last night, to start a milder antibiotic. However, in order to administer the more powerful antibiotics he needs to fight this lung exacerbation for the long period of time we will need it, we must have more stable, permanent access. The plan for today is for the PICC (peripherally inserted central catheter) line team to look at him and see if they think they might be able to get one in him. He did have a PICC back when he was in the NICU, but I was told that those are a lot smaller, and you also can't go home on one of those, so it isn't really an option. Hopefully we will be successful in getting access today and will get going on these drugs, because the sooner we get the regimen started, the sooner we can go home! It's hard to get things done on a weekend, and with this being Friday, I really want to get set up. If things get pushed back, we could be here well into next week. Another good thing is that he will probably come off the oxygen at some point today - at least while he's awake. This is progress needed in order to go home, too.

Why didn't we know he was sick? Clinically, the subtle increase in his work of breathing was the only indicator at home we could've noticed, and we wouldn't really have been clued in to that until it was a little worse. It was just kind of lucky that we were here for a check up yesterday. The good news is that coming in for this check up probably saved us from ending up in the emergency room over the weekend, and possibly another PICU stay if his respiratory distress had heightened. What happens with CF, particularly in babies, is that the teeny tiny distal airways become affected with inflammation first, and the changes are so subtle the patient nor the parent often even knows the disease is worsening. For awhile, the patient will feel fine until the exacerbation (or infection) gets worse. This is another important reason to come in for regular check ups and pulmonary function tests. Once the child grows, the airways also grow, so when the child is older they are able to clear those airways better with medication and manual airway clearance and postural drainage.

Part of the other reason we didn't know he was sick is because his weight gain over the past month has been phenomenal, and so when you're doing well weight-wise, the symptoms of illness take a little longer to show up. He's gained an average of 18 grams a day! He now weighs about 16 pounds and 5 ounces! I am increasing his feeds every 3-4 days as he can tolerate it and that combined with the enzymes and supplement is really working to put weight on him. He's also doing so well in physical therapy that his muscle mass is also increasing. Coming in this early probably prevented him from getting dehydrated, too. So for now he is sleeping peacefully and we are just enjoying the quiet time together. I'll post later to share what happens today.

Back in the Hospital Again

What a long day we've had at UNC. We got here about 13 hours ago for a routine CF Clinic appointment. Brett has been looking so great and gaining weight steadily and overall seemed to be doing very well. Today when we got here, the first thing they did was check vitals, including checking his oxygen saturation (sats). The pulse oximeter read 87! The goal is for it to be 100%, and at least 97 or above. This was the first sign that all was not right. He was laboring to breathe slightly, but it was very subtle at the time. We did an albuterol treatment then a chest PT and the sats went up to about 92 but that was the highest it read. Next we went downstairs for a chest x-ray, not really expecting to see much, because his lungs sounded absolutely clear by listening with a stethoscope. That is what is so sneaky about CF! The disease starts in the teeny tiny distal airways, and the changes are so subtle it's hard to notice. After the x-ray we went back to clinic and checked the sats one more time, and it wasn't any better. It was then decided that he couldn't go home without better oxygen saturation, so we would stay the night, get a regular IV to start a general lung coverage antibiotic until we could see what was going on - wishfully thinking it was just a mucus plug or something causing this. He was started on a half liter of oxygen at that point. However, once the x-ray came back it showed a very bad exacerbation in his lungs - due to some sort of irritant (bacteria, virus, etc.) that has caused his airways to become inflamed and constricted. It was decided then that he will indeed be on another 2-3 week course of IV antibiotics again. Trouble is, now we don't have a broviac anymore. So tomorrow I think they are going to try to get a PICC line in him and see how that goes. If they can't do it, he may have to have another broviac put in to administer the medications for the long period of time that it's necessary.

Our appointment was for 11AM, and we finally got back to be seen at 11:45 AM. By 2:00 or so it was decided we'd be staying at least overnight, but I had to wait on a bed, and they knew it'd be quite a while. So my phone battery was dead and I had to use their phones to start calling and trying to arrange for childcare and someone to bring me my overnight stuff, since Rob has just had shoulder surgery and can't take care of a baby! Or drive out here on the narcotics he's taking for pain!

The staff here were incredibly accomodating, as usual. They sat with Brett while I ran up to buy a sandwich for dinner. At 6:00 the clinic closed so we had to go wait in the ER (because he still needed oxygen) until the room was ready. The room got ready about 8:30ish and we began to try to get settled. They tried once unsuccessfully to get an IV in his foot. A little bit later on they tried his hand, and got it to work, so that's all done and we did all his medications and treatments for the night. He is one tired puppy! He didn't get his naps today like usual and being here all day having stuff done to him has wiped him out. I'm pretty tired, too, with a huge headache! So now he's asleep and I'm going to bed to try to get a little sleep, as I expect tomorrow will be a pretty eventful day. Thanks for your prayers and support!

Christmas 2009

We enjoyed Christmas very much this year. The grandparents came to visit, Pop and GG and Grandpa. Christmas Eve Mark attended his first candlelight service at RIchland Creek.


Christmas Day we opened presents and enjoyed each other's company. We are all so grateful to the Lord for sending His Son Jesus to be the sacrifice for our sins and reconcile us to the Father. The next best gift was having our little Brett home! First, that he has made it this far. This year with his health has just been so uncertain, and I knew there was a possibility we would end up in the hospital on Christmas like we did on Thanksgiving. I am overjoyed that his first Christmas could be spent at home and all my boys were in the same place on this special day.,m

Mark and Brett

Monster truck toys

Monster Jam Tickets!!

Playing with Pop

Playing Wii

Grandpa and Gantt

Pop and GG with twins

A Little Fun

There is nothing really new to report on the health/wellness front, and for now that is a good thing. Not having to take care of the Broviac and do IV antibiotics lessens the workload a good bit at home. It means we don't have to stay up really late at night and we don't have to get up quite so early. Now we have our regular medications every 3 hours and breathing treatments and chest PT several times a day, but we can determine when we want to do those - there is not a set time like there is when Brett is on the antibiotics. So we're praying Brett can be home for his first Christmas. Thinking positively and enjoying our time together.

We had our Chick-fil-A Christmas party at Adventure Landing last night. This is the first year we have allowed Mark to attend, and he had a ball! Daddy won lots of tickets...

And we did almost 2 hours worth of continuous go-carts!

We also had an "adventure" making sugar cookies from scratch and decorating them. It was fun, but a lot to clean up!

Since we were unable to get Christmas cards out this year the way we normally do, we put together this short slideshow. It takes a minute to load, but it's cute! Enjoy!

Make a Smilebox slideshow

Update on Brett - and- Mark rides a bike!

Brett's surgical procedure to remove his Broviac central catheter was successfully performed last Friday, December 11. He also had a bronchoscopy done. Pretty much anytime he has to go under general anesthesia for any reason, they will want to do a "bronch." This is where they go in with a camera and look around. If there are airways that are plugged with thickened secretions, they can inject a little bit of saline into that airway (called a "wash") that clears that one airway. The thickened secretions that are removed become the culture that they can set aside and see what type of bacteria are growing in the lungs - thus knowing better whether there is an infection, and if there is, what antibiotics work best on that particular bacteria. So far, the cultures have only grown oropharyngeal flora, which is good news. The bronch did show that Brett's airways are inflamed and swollen. Since this is the first bronch he has had when he is "well," there is nothing with which to compare this newest bronch. It is hard to tell if he has a virus coming on or if this is the way his lungs normally are. And there is no way to know as of now. He carried a fever for a bit after the procedure, but pretty much felt back to normal within a day. He is back to his regular smiley self!!

Mark rode his bicycle without training wheels for the first time tonight! Here is the link to the cute video if you'd like to take a look!

YouTube - Mark riding his bike for the first time.

Christmas Decorating

Once home from our last hospital stay over Thanksgiving, we set out to decorate the house for Christmas. Mark especially loves doing this at his age. Here's what we put together.

Mark decorating the tree

Mark's favorite part is putting the angel on the top

The mantel - this is a new set-up for this year. Everything is completely new! Do you like it?

Even Brett and Gantt got into the spirit!!

Upstairs handrail

The Gingerbread House Mark made -- and ate

Our Christmas cards - thank you everyone! I'm sorry we did not get any out this year! (Been a little busy...)

The tree - we love it!

Gantt, Mark, and Rob's little overnight trip.

Some of you know that Mark has been interested in Monster Trucks lately.  I helped a little by getting my truck lifted and getting off road tires.

Since I had both boys while Jennifer was spending the night in the hospital, I had the idea to take them to see Grave Digger near the coast of NC.  We were able to meet Dennis Anderson, the founder and driver of Grave Digger.  He has done more for the sport and Monster Jams than any other person.  Mark had a blast and got Dennis to sign his hat and one of his toys.

Enjoy the pictures.  Some of the photos are from Marks perspective.  It is interesting to see how big it looks from a 6 yr olds eyes!!

Couple more pics....

In order for the trucks to get in the garage, they have replace the huge 66 inch tires with much smaller ones.  Mark thinks they look kind of funny.