Made it to Roanoke

Carilion Children's Clinic
Roanoke, Virginia

Brett and I made it safely to Carilion Children's Clinic in Roanoke, Virginia this evening by ambulance transport. Grandpa followed behind us and helped us check in and get settled. Our UNC doc talked with the doctor in the ER at Pocahontas and told him what treatment to start, so at least even though we aren't home, these folks are all following the wishes of the folks who care for Brett at home. I was surprised that even though Pocahontas was small and they weren't equipped to give Brett long-term care, they did what they needed to do to stabilize him and get him ready for transport. They did it efficiently, also. They were all very, very nice. They also thanked me for being patient with them - although I thought I did nothing special - they must get some rude people in there. I knew that although they didn't have all the tools and equipment needed, they used what they had and they were doing their best with my son, and I appreciated that. The transport team from Carilion was great, and I enjoyed their company on the ride down. Brett did great, also. He never cried the whole way - just stayed away looking around and interacting with the ladies in the back. I had to sit up front with the driver.


Children's Miracle Network donated this ambulance


Loading up for the 2 1/2 hour trip

Rob and Mark are still skiing at Snowshoe, and Gantt also stayed at Snowshoe also with our sitter, Brittny. Grandpa will drive back in the morning and they plan to finish out the vacation as planned. I am thankful I got to ski at least one day and we had a great time with Mark. Last night at dinner our dessert was s'mores tableside! They brought this container of sorts with fire and we actually roasted marshmallows at the table and made the s'mores. Mark LOVED it. Brett and I will await transport to UNC based on bed availability. Right now all beds on the peds floor are full. That could change at any time; however, Brett is not priority right now based on the fact that he is already in a hospital getting care. If some sick kids come into UNC, they will get bed priority. So we might be leaving in the morning, and we might be hanging out at Carilion for a few days, which would be fine, too. We just go with the flow, remembering to be faithful where we are, and we're at Carilion right now! You just never know who you might meet and what God might have in store with those relationships! If we stay here another day, I might even get to see a friend who lives 2 miles away from the hospital I haven't seen in many many years!



Arriving at Carilion


Grandpa and Brett at Carilion

As far as Brett's problems and treatment, based on the chest x-ray it looks like just another of his lung infections. Same treatment, same deal. IV antibiotics and oxygen. Check back tomorrow for more news.

And by the way, you CAN comment on this blog!! For a while I thought nobody was reading this because nobody ever commented on my posts (except Tara and Leslie). Then I run across people who ask me why I haven't posted in awhile, and others who I never knew were following tell me that they've read every post! Come on people! I might stop if I don't know you're reading!! And one friend told me she was my self-proclaimed blog stalker - you can come out of the closet now! LOL see y'all tomorrow!

Ski Trip/Hospital Stay

We arrived safety at Snowshoe Mountain here in West Virginia on Saturday, Feb 27. It is our first trip taking the whole family, including Brett. On the way up we stopped at Thomas Jefferson's Monticello, for a tour of the house and grounds. Grandpa has been wanting to visit there for 30 years and it just never worked out. Since we were driving right through Charlottseville on the way to Snowshoe (via Richmond), we made the stop. Mark has been studying the birth of our country all month in school, so even he was actually interested in the tour as well. He asked questions in almost every room of the house. Yesterday Mark had his first ever ski experience. He had a private lesson and did great! He did so well that his instructor couldn't believe it was really his first day ever skiing. She said his ice skating skills really transferred over to help him master the basic ski skills quickly. Oh, that and, he has no fear! He even said to us he didn't need lessons because he already knew how!
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We've had a wonderful time so far and I have lots of great photos to share later but right now the ski trip fun has been cut short for me and Brett (and my father-in-law, Dick). Brett started having some respiratory distress soon after we got here, and I've been monitoring the situation, trying to decide if I should drive home to UNC or wait. This morning, though, each time I checked his sats (with my new fancy pulse oximeter!), the highest I could ever get was 80. In fact, when I was on the phone with the doctor, it was actually 75. He recommended we call and ambulance and get started on oxygen as soon as possible, then have them drive us to the nearest hospital. We did so, and after a few minutes on oxygen, Brett's color in his cheeks came back and he was achieving sats in the 92-95 range. The closest hospital is Pocahontas Memorial Hospital, where they took care of his acute needs, and all the routine stuff that we expect to be done for Brett when he comes in the hospital - oxygen, albuterol, chest x-ray, blood cultures, flu and RSV screens, etc. The people here are really nice, and although they do not have the facilities needed to continue proper care for Brett, they did fix him up and got him more stable. I was impressed with how quickly they were able to talk to our pulmonologist at UNC and how quickly they arranged for a transfer as soon as all their tests were done and Brett was feeling better. His chest x-ray showed a lot of inflammation - possibly infection - but since they didn't have a old x-ray to compare it to, they didn't know if it was baseline for him or not. But since last month's discharge and subsequent one-night stay at UNC, the chest x-ray then looked great. I am assuming this is a new inflammation/illness. He has already been started on the IV antibiotics decided on by our UNC doctor and the ER doctor here.

This afternoon we are being transferred to the Carilion Children's Clinic in Roanoke, Virginia. They preferred to bring their own neonatal specialized ambulance for the trip, so they are coming here to pick us up. It's about a 2 1/2 hour trip. I hope to be arriving there this evening. Rob and Mark (and Brittny and Gantt) will be staying at Snowshoe to finish out the vacation, while Dick will be traveling to Roanoke with me tonight. More updates to come!

Pocahontas Memorial Hospital
Marlinton, West Viriginia

A Little Oxygen always makes Brett happy!

Wordless Wednesday

More DC Fun

There were several special guests at our Chick-fil-A seminar, including Andy Stanley from North Point Church in Atlanta, and Muhtar Kent from the Coca-Cola Company. The surprise guests included Danny Cahill, the winner of the Biggest Loser reality tv show (to inspire us) and entertainer Tim Hawkins (to amuse us)! We very much enjoyed Tim Hawkins. He debuted his new Chick-fil-A song, which was funny just like the other one. We enjoyed every minute of our trip and the break from our daily responsibilities at home. The kids did great with Mom and she did great with them!! Here are a few pics!


Rob and I with Tim Hawkins


Seminar 2010


Seminar 2010


Truett Cathy (88 years) with Rob


Rob and I with Muhtar Kent, the Coca-Cola Company

Greetings from Washington DC!

Right now Rob and I are in Washington, DC, attending Chick-fil-A's 40th annual Operator's Seminar. It's our 10th seminar! Huge thanks to my mom for coming to take care of the kids so I could attend this year! Dad, too. He came up for the weekend, and I've arranged various gals to help mom while she's there. This is the first time Rob and I both have left the twins for any length of time. I believe this is my first time away from them since they were born. I am not anxious about it at all! Mom knows the drill very well, and the docs at UNC know her from all the times Brett's been in the hospital and she's come to stay with him there. Also, various local gals are helping out pretty much around the clock. And of course we have some absolutely wonderful neighbors and many wonderful local friends who would help with anything they could. You all know who you are, too! We feel so grateful that God has blessed us with such a wonderful support system through all our avenues of contact in Wake Forest and North Raleigh. I think He knew we couldn't do it without you all!

New Post Wait is Over!

Mark's teacher selected him to be "Student of the Month"!! The character trait they learned about this month was love. I thought it was appropriate for her to choose him this month because he really is such a loving little guy! He is very excited and he will be recognized at chapel this Wednesday. This month they learned about American History and how our country came to be. His class led chapel all month, and they put on a short play which was so cute to watch. He is doing very well in school, and he also participated in the art contest. Above is a picture of his art, and below he is with his class during the play. You can see him sitting in the front, smiling at the camera!



Gantt is doing very well! He is growing and growing and growing! He is in the 75th percentile for his age for height, and that's not counting being born 2 months early! When he is standing, he comes up several inches above my knee. It is incredible. He's crawling now and pulling up - getting around very well. He has recovered from his ear infection and illness he had in January, and doing much better. He still goes every month to get his Synagis shot, the shot that ouhelps keep him from getting RSV, which is an extremely serious illness for preemies. He's a beautiful baby and such a joy to have in our family!!



Brett is doing well right now. He gets his monthly Synagis shots as well. He is cutting about 5 teeth simultaneously, which is causing him to be unable to sleep for very long periods of time, but other than that, he's still his happy self. He is enjoying physical activity more and more, and he has a physical therapy session once a week. He also gets developmental therapy once a week. In March we are going to add feeding therapy at my request. Since he is tube fed, he doesn't drink anything right now. He does eat baby food, and also takes his enzymes every 3 hours with some baby food, but it has become evident to me that Gantt's feeding skills have far surpassed Brett's. This is why I believe Brett would benefit from some feeding therapy. I don't want him to get too far behind, especially since eating is such a fundamental and crucial skill.

After our regular 3 week run of IV antibiotics, we went to clinic and Brett's sats were still low. His lungs were in fairly good shape, though, so the docs decided to leave him on antibiotics for another week (not what I wanted to hear!) and add an oral steroid and do a few extra doses of his inhaled steroid to see if it made any difference. That Saturday night, Brett's breathing became so labored that I believed the doctors ought to see him. I thought he needed oxygen because I thought with his work of breathing there was no way his sats were going to be above 90. Rob took him over to UNC and his sats proved to be over 90 indeed - he stayed around 95 during the time he was at UNC. They said we did make the right decision by bringing him in based on how he looked and the limited information we had at home to know how well his lungs were working. Rob just stayed one night with Brett then was able to come home on Sunday afternoon. We hate to spend the night in the hospital, but a few positive things came out of it. First, they did a chest x-ray (which is customary for us in the ER) and it showed that the lungs were clearer than they were even the week before, which meant the antibiotic treatment was effective. Second, that night proved that a pulse oximeter for home use would be extremely helpful! The doctors talked with the insurance company and got the pulse oximeter approved, so now I have one at home, and when in doubt I am able to spot check the sats. This way I have more information and can know whether or not I need to bring him to the hospital or if it can wait. Also, I can always talk to the pulomonolgist on-call about what to do any given night. They are all familiar with Brett and his situation, history and condition. We love them at UNC! Pretty soon I am going to be getting a machine that we will keep on him constantly for 3-5 days and it will collect his oxygen saturation data. Our doctor feels like he wants to have more information on what is going on with the sats and this is one tool we have to get a more complete picture of what is going on in Brett's body. We finished our extra week of antibiotics, which meant he had been on them for a total of 4 consecutive weeks. All I can say is how grateful we are for the central line Brett has so that we can do the IV therapies at home!! There are more details on Brett, but that will have to wait for another post. Thanks for reading!!

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.