Kickin' for the Cross

This week's camp was called Kickin' for the Cross, which was held at Bay Leaf Baptist Church in Raleigh. Mark really enjoyed it and we liked the Christian influence. The young counselors seemed to be great with the kids. He can't wait to go back next year!

Go Mark!

Wordless Wednesday

A Look Back

Gantt with G.G. - 5 Days Old (about 33 weeks gestation)

April 7, 2009

Gantt with G.G. - First Birthday

April 2, 2010

Pleasant Surprises

Brett in recovery

Sometimes we get pleasant surprises on this journey. Originally the plan was to come in Monday (yesterday) for the pH probe. Then our doctor called on Sunday and said his throat cultures from last Tuesday (the day he got admitted because of the rapid breathing and lung infiltrate) grew 4 colonies of the dreaded Psuedomonas. Therefore, he wanted to do a bronchoscopy (hereafter referred to as "bronch")  to see what the Brett's lungs looked like inside, and to see whether the Pseudomonas is in fact in his lungs.

Bronchs are only done on Tuesdays and Fridays. We had good fortune and were able to get scheduled for today, Tuesday. They had reserved a pH probe for Brett and we were planning to stay the night to get that test done. Once we got to the pre-op room, our doc told us that the pH probe they had reserved for Brett broke down, so we were going to do it tomorrow night instead. He just felt as though Brett was really going to need to be hit hard with IV antibiotics for this illness, and that would mean placing a more permanent IV line so we could finish the treatments at home. Whenever you start IV antibiotics, you have to stay 3-4 days or so to make sure the levels are correct for bodyweight.

I went to wait and they came back when he was done and said that his lungs looked clear! There was a tiny bit of fluid as you would expect to see with this infection, but hardly any at all. The lungs were of course inflamed, but since the airways were clear, we were able to start Brett on an inhlaled antibiotic and go home! The pH probe has just been put on hold for awhile until we get this infection more under control.

The inhaled antibiotic is called TOBI, and most CFers have had experience with it. Brett's going to do 21 days on, 21 days off to begin with, then perhaps get another bronch done. Bur really, who can say? Things can change so fast with Brett's status and with treatment decisions and hospital schedules. They may not decide to do another bronch at all. So while they were in Brett's lungs they did some washes to help clear his airways further and also to obtain samples to culture. If what grows are the same bugs that the throat culture grew, then we stay the course of treatment. If they are different, there may be an adjustment of medications. It takes about 5-7 days for the cultures to mature. He has an appointment with his GI doctor in the morning so I'll be driving out there again to do that. But I'd rather sleep at home and drive out there than stay overnight!

Oh, another thing: my mom asked who took the photo above because she thought it was so perfect with the lighting and the angle and all. I actually was just sitting there holding him and reached out with my iPhone and snapped the pic of us! It turned out really good!

*Breathe*

Brett is enjoying his newly-earned mobility! He's been working hard in physical therapy every week learning to strengthen those muscles and use them to lift himself and get around. It's quite a challenge, though with him still being on a 20-hour tube feed. He has to "carry his own load" by wearing his little backpack (thanks, Annie!) because the IV pole would just fall down if he pulled that around.

We all marvel at his "flexibility." Mostly it's because his muscles are weak. Here is Mark trying to figure out how Brett's legs fold that way!

Originally, Brett was going in only to get the pH probe test done.We have new information from the throat cultures taken last Tuesday - the cultures grew a couple of types of bacteria, so our plans have changed, and he needs to have a bronchoscopy done. This is when they go down his trachea with a camera and look at the state of the insides of his lungs. They also wash a few areas with saline and get a few cultures from inside the lungs. This will be Brett's 4th bronch. While he is under anesthesia they will go ahead and place the pH probe so he won't have to "bear" that while awake. We will stay one night at the least, but we will know more tomorrow.

We've increased the chest PT from 3 times a day to 4 times a day since we know there is bacteria in the lungs growing into an infection. This helps to actually physically knock the mucus loose from the lining of the lungs so he can cough it up. He usually doesn't, but it at least keeps the mucus moving around more so it has less of a chance to sit there and collect more bacteria in one place.

Here's our regimen this week.

Enzymes - 18 pills a day
Prisolec - 2x/day
MCT oil - 2x/day
Vitamins - 1x/day
Probiotics - 1x/day
Actigall - 2x/day
Baclofen - 3x/day
Augmentin (oral antibiotic) 3x/day
Potatoes in g-tube 3x/day

Chest PT 4x/day
Pulmozyme 1x/day
Albuterol 2-3x/day
Flovent 2x/day

Table Salt
20 hour Tube feed†

Some of these medications we have to mix and prepare. We are preparing 25 oral syringes per day to administer through his g-tube. I am so thankful for the g-tube because without it we would have to somehow get all these meds into his mouth every day. I hate to even think about that!

Total Time spent managing CF: About 3 hours

WinShape C3 Camp

Attacked by lobsters!

This past week was WinShape C3 Camp for Mark, which was held at Wake Crossroads Baptist Church in Raleigh. WinShape is a foundation that was created in 1984 by Truett Cathy, the founder of Chick-fil-A. For many years they have hosted all sorts of camps in Rome, Georgia, for children to have learn & grow, have fun, and build character - in essence, to "Shape Winners." In the recent years, WinShape has expanded to include many different ministries, which you can read about if you click the link. One of the newest ideas is WinShape C3 camp - the Ultimate Day Camp Experience -- this time, you don't go to camp, the camp comes to you!! The C3 staff travels to host week-long day camps in many different states. This camp is top-notch and is put on by very talented, creative, and caring people. Visit their website for information on a camp near you, or to find out information on getting a camp to come near you! Here are some photos and you can see what a great time he had.  

There are 3 villages based on age. Ocean, Safari and Alpine. Mark's village, Ocean, won the triangulation trophy both years we've had C3 camp at Wake Cross Roads. Triangulation is sort of a contest between the three villages.

Mark and Spicy Cow

Mark and Baby Cow

Mark on "Village Appreciation Day"

He wanted to know if it looked like he appreciated his village!! What's written in red on his neck is the word "lobsters," because he was in the lobster group which was in the "Ocean" Village.

Hospitalization #8 - Day Three

Brett back to his smily self

Going Home today! What a great surprise! The doctors have switched Brett to oral antibiotics so we get to escape from here in record time! We still have the GI issues to deal with, and the next step is to do a pH Probe. They tried to get this scheduled while we were still here, but were unable to make it happen. Therefore, we are going home, but scheduled to come back in Monday for the probe and stay overnight.

Thank you for all the well-wishes and prayers. I really think making the decision to come in right away helped us avoid a longer time to get better. And probably more lung damage as well.His blood tests showed he was a lot more dehydrated than he looked. Fluids and antibiotics did the trick for him to feel better, although it goes without saying that he is never completely better or cured. Going home now to see the rest of the family and enjoy a night together again.

Hospitalization #8 - Day Two

This is what my boys do when I'm not home! LOL!

(Gantt is pushing Mark around on Brett's IV pole)

Both boys were asleep when I got home, but I got to see them this morning. It was nice to snuggle and kiss my Baby G. I was able to take Mark this morning and pray with him before his day at Winshape C3 Camp started. I hate telling him "I'll see you tomorrow" just as the day begins. I went home and packed up all my stuff from the house and then came on out to the hospital.

So we still don't have a conclusive answer about what has caused this recent lung problem, but the doctors highly suspect that his Nissen fundoplication has been compromised in some way. He's been vomiting formula here and there for about 2 weeks. This is not supposed to happen when you have a Nissen, and hasn't since he got it done in May 2009. It's a surgical procedure we had done when he had to have a major surgery anyway. It's designed to increase the pressure in the lower esophagus to prevent reflux but still permit food to move down the esophagus into the stomach. Brett's stomach is wrapped completely around his esophagus. His doctor thinks he vomited some formula in his sleep then aspirated it. Aspiration happens when the stomach contents pass up through the esophagus and into the lungs. The stomach contents in the lungs can cause pneumonia.

Brett during upper GI study

He also thinks this because I told them he had a dry crusty stuff on his mouth when he woke up, which I had never seen before. Even in a healthy person there is a possibility that aspiration could cause a pneumonia, but usually not. A child who has CF is much more susceptible to that happening, and it would look like a spot on the lungs like Brett's does. It is possible he might have a virus or a general infection caused by bacteria, but we will know about that when the tests come back.

Brett had an upper GI study done today, which he absolutely hated. He's had them a few times before, but having to be totally strapped down is so tough for a baby. So he screamed for about 30 minutes at the top of his lungs. Maybe his lungs are all cleared out now -LOL! During the GI study, it appears as though the Nissen is intact. There was no glaring loosening through which the liquid barium went straight through. Obviously, though, somehow the formula IS coming up. Maybe when he puts enough force behind his coughing, etc. it is coming loose a little, but not during a simple test. Brett's pulmonologist will talk to his surgeons about that and what to do about it. Also, as I said before, Brett is presenting differently this time. His sats have stayed high and he is not wheezing, and he's not requiring oxygen! I think this is probably the first time in the hospital he hasn't needed oxygen. So for now, Brett's doc is treating it as though that's what happened, an chose a different antibiotic that is better for cases like this. The hope is that it will work and Brett will be doing a lot better in a few days, we can switch an oral antibiotic he can go home on so that we don't have to put a more permanent central line in! That would be the best case scenario. Here at least for 48-72 more hours.

Hosptialization #8 - Day One (July 6)

Sick Brett at home

When Brett woke up Tuesday morning, he was not his usual smiley self. Despite a pretty good night's sleep, he was kind of whiny and lethargic. Also he was breathing rapidly -- about 70-80 times per minute, compared to his usual about 40 times a minute. We thought he might be sick, but sometimes it's hard to tell. His physical therapist was due to arrive about a half hour after he awoke, so I decided to see what happened with that session. My thought was that if he felt ok, he would perk up during the session and begin playing and laughing like he usually did. If he didn't, I thought I would take him to the hospital. Unfortunately, that didn't happen, and he wasn't able to do any therapy. He just wanted to lay in my arms and suck his pacifier. Sometimes it's really hard to tell whether we should take him or not, but with him, we've learned that we must err on the side of caution. Because lung damage is irreversible. Preventing lung damage is the name of the game in extending the life of someone who has cystic fibrosis. If we can get antibiotics going a few days sooner, that might mean that we've prevented some lung damage. Obviously, the other positive thing is that we can get him feeling better faster, avoid trips to the PICU, and usually get out the hospital sooner.

Brett in x-ray

I showed up and surprised the folks at the clinic, but the ladies know me well and know that if I just show up with Brett, driving an hour to get here, then I must really think he's sick. His doctor (pulmonologist) took him in without an appointment and agreed with me that he was working too hard to breathe and that he looked as though he wasn't feeling well. However, he wasn't presenting the way he usually does - with heavier wheezing and sometimes grunting.

When a CF patient comes in, the assumption is that there is something going on in the lungs that is causing inflammation, but we don't know what or why. There is always the usual battery of tests and procedures, beginning with a chest x-ray. We immediately went down to radiology to get one, and it showed that Brett had a definitive spot on his lung. Usually, Brett's inflammation presents as sort of a haze or a cloud across both lungs, so this was clearly something acute. The other usual tests consist of nasal swabs to check for viruses, throat swab to check for certain bad bacteria, and blood tests of all sorts, including a culture for bacteria. The main suspicion, though, is basically that he vomited some formula during the night and aspirated it, causing a pneumonia.

Brett and me hanging out in the ER

By the time we returned from x-ray, his breathing work was even harder, and he was starting to flush with fever. The bad news, they said, was that there weren't any beds available. So there was a probability that we were looking at spending the night in the emergency room. That's certainly not fun, but when you are prepared for it, it does make it easier. We went down to the emergency room to get settled in. We had waited in the ER for a bed before, so it wasn't anything new. By then his fever had spiked to 100.2, and he was just even more cranky because he hadn't really napped and getting the x-ray is no fun. The wait was shorter than we expected because a bed became available on the 7th floor. Unfortunately, it's not the main "CF" floor. This makes no difference in our care - our same doctors see us, and the nurses are great, but it's just nice to be on the 5th floor "where everybody knows your name." I'm sure you understand. BUT, it's better than spending the night in the ER for sure!

When we got to the room, the difficult part began. Had to get the barrage of blood tests. Because we had the Broviac removed last month, he has no central access for which to pull blood out of OR put fluid/drugs into his veins. The nurses looked for good veins over and over and over and he ended up having to get stuck 3 times. Well, the IV went in on the first try, so that wasn't the bad part. The bad part was getting all the blood that was needed for the labs. Then Rob came and we switched off. I went home and he stayed the night.

Back in the hospital. I will post details tonight.

Wordless Wednesday

*Breathe*

"Breathe" is the title of my *new* weekly post for what is going on with Brett medically and his life with Cystic Fibrosis. I have decided to post something either about Brett's health or about something CF related every week.

It will usually be posted on Monday. If it's not on Monday, it will be on Tuesday that week. They'll be labeled so you'll be able to find them easily if you miss one or two. And as usual, if you have a question, please comment on the post and I will answer it!

Brett in the pool with Daddy

I was having a hard time knowing how much or how often to talk about Brett's health and CF, because it's important and you want to know, but I also didn't want it to be the focus of this blog, the same way it is not the focus of our family. Rob suggested I update you on Brett once a week, and if there isn't much to tell I'll do a feature on something CF related. That will give you a Monday update, a Wordless Wednesday pic, and another couple of family-related posts throughout the week. Hope you enjoy it - here goes.

Although I mentioned a few changes we made to Brett's regimen during his last doctor's appointment, I wanted to update you on his status in general. Since Brett is now free of his Broviac-Hickman catheter (or any other sort of central catheter), he can now have regular baths and go swimming in a pool. We are so relieved!! He does not like bathtime, but it sure is easier for us to clean his body. The pool, as you can see in the photo, he does like!

Brett getting his Pulmozyme treatment

Current Medications and Supplements

Here is a photo of all the medications and supplements that Brett requires right now. YES, it feels like our kitchen is a pharmacy. Especially with Mark's meds too. Mark actually uses the exact same medication with the exact same inhaler and same size mask- so it's important to be organized and keep everything separate so that Brett doesn't get any of Mark's lung bacteria. And YES, the folks at Wake Forest Drug love us as much as we love them! We feel as though Scott and Debbie are a crucial part of Brett's care team. And since last April, they've been getting a LOT more business from us LOL!

Below is the laminated schedule I keep on the front of the refrigerator to keep us all on track with what he needs throughout the day. Whoever administers the meds or the treatments just marks it off with a dry-erase pen. At the end of the day I wipe it clean and start all over the next day. Whenever his regimen changes, I just change the document and print out/laminate a new one. This is also helpful to take whenever he is admitted to the hospital. The nurses are very good about keeping to it so that he doesn't get off schedule during his stay.

Daily Medication Regimen

In addition to this daily routine, Brett has a physical therapist come to the house once a week, a feeding therapist once a week, and a developmental therapist either once a week or every other week. That's 2-3 hour long appointments each week. Whenever he has a central line, the nurse also comes out once a week. Thank goodness they come to the house and I don't have to get him ready and go out. He gets these therapies from companies who work with the Raleigh CDSA. He's been getting physical therapy since first got home from the hospital in August 2009. He has come a long way - he's actually crawling now! More on that next week.

Current Meds:

Creon (digestive enzyme)

Albuterol (bronchidialator)

Flovent (inhaled steroid)

Baclofen (muscle relaxer)

Pumozyme (mucus thinner)

Ursodiol (helps control bilirubin level & liver enzymes)

Prilosec (prevents reflux & helps enzymes work better)

Current Dietary Supplements:

CF Vitamin Complex (A, D, E & K)

Jarro-Dophilus powder (probiotic)

Instant Mashed Potatoes (Stool Thickener)

Zinc Sulfate (to increase enzyme performance, for growth & fighting off infections)

MCT Oil (Fat, fat, fat!!!)

Table Salt (to make up for excessive salt loss)

Total hours spent daily managing CF:

about 3 hours

This is probably the least amount of hours it will ever be, so it's good right now! Relative to how much more intense the regimen has been at other times and what it could be in the future, it's not too bad. I choose the schedule for the medications and the times aren't as strict as IV antibiotic times, so we don't have to break ourselves to stay on the schedule to the half hour and don't have to get up in the middle of the night several times to give meds. With that said, it is still of utmost importance that all this gets done and gets done throughout the day. We can't do it all in the morning and have it all done for the day, and we can't save it all until evening, either. And we *never* skip the treatments. CF never takes a day off, so we can't either!!

Fun-Filled 4th

Chillaxin'

Hope your holiday was restful and fun. We spent the day at a cookout they had at the pool. Mark seemed to enjoy it and he and Rob got to spend some good time playing basketball in the pool and sliding down the waterslide.

Brett decided not to take a nap before we went, so much of my time was spent doing this:

But I did get to do some of this:

And eventually Brett did this:

But my sitter and I did take the babies home early. Mark and Rob enjoyed late-night fireworks.

Bubble Wrap

Despite everything he goes through physically, our Brett is full of life and joy. This 35 second video is an example of how much delight he takes in the simple things. He is already laughing at the beginning just in anticipation of what Mark is about to do! Be sure your speakers are turned on :)

Brett's Latest Appointment

Last week we had an appointment with Brett's gastroenterologist at UNC. Brett has been having a lot of issues with tolerating his feeds. This came about over the last 3 weeks to a month ago. By "not tolerating," I mean that he would scream and cry and I would have to "vent" his stomach by allowing the air trapped inside the stomach to come out through the g-tube. Once all these air bubbles came out, he would be fine. This happens occasionally, but it was beginning to happen about 2-3 times a day! Also, he has always gagged and sort of dry-heaved with his bowel movements. But it had been getting worse.

The problem with all this is that he was not getting all the feeds he needed to assimilate the nutrients and grow. This became a big concern for us since weight gain is such a difficult thing to accomplish when a person has CF, and he needs to grow. Plus, half the time I had just given meds in the g-tube, so I didn't know how much medicine he got, or whether I should give more.

The first course of action for me was to call his nutritionist at UNC. We decided to slow down the feeds and go back to running them 22 hours a day. That is only 2 hours off! So it cramps our style a little bit, but it has seemed to help. She talked with his pulmonologist (main overall doctor) and he suggested another visit with the GI doc. The visit lasted 2 hours, and it fell right at naptime. I am training a new sitter, so I brought Gantt along this time and she kept him in the waiting room. Therefore, both boys were deprived of their usual morning nap.

Here they are after the visit:

Gantt

Brett

The visit was fruitful, though, and several changes were made. First, we are giving him instant mashed potato flakes mixed in a little water through his g-tube. The hope is that the potatoes will help bulk his stool so that his stool is not so runny and painful to pass. Second, we started him on a medication called Baclofen, which is a type of muscle relaxer. This is supposed to relax his stomach muscles some so he may not gag and retch with each bowel movement. Third, we added probiotics to his daily supplement regimen. So far, these changes seem to have helped. He is definitely not gagging as much, and we haven't had to vent so often. Now it's maybe once every other day or two, so he's keeping the feeds in and beginning to gain the weight back. Now I'm beginning to advance the rate of the feed so we can get back to tube feeding just 20 hours a day - 4 hours off is much more tolerable than 2 hours off during the day.

Wordless Wednesday

Bath Buddies

Hockey Champs!

Three Time Champs

Back in April, team Chick-fil-A at Wake Forest won the winter championship for their league! The score was 6-0. This is their 3rd win, and they've made it to the championship game for the last 5 consecutive seasons. These guys love playing hockey together every Monday night at The Polar Icehouse at The Factory in Wake Forest. Below are a few "action shots."

Final Score

Rob's friend Charles Johnson came to watch the game

Wordless Wednesday

Twins

Happy Father's Day!

We are so blessed to have Rob as the father in our family! He does so much for us and just loves us all. He is the very best Dad!

We also want to express our love and admiration for our own dads, Dick Reasoner and Ron Gantt. They have always been great fathers, father-in-laws, and now grandfathers to our sons!

These are the songs Mark sang at school when they had "Dad's Day" last month. They had a program then went outside and played a game of kickball. It was hot but fun!

Gymnastics & Sprained Ankle

Mark was having a great time at gymnastics camp the first couple weeks of summer, then he sprained his ankle. But we're not sure that it happened at gymnastics.

Physical Therapy Exercises

We just noticed that he was limping, and when we questioned him he said he wasn't sure what happened or why he couldn't walk right. We took him to Rob's physical therapist at Athletic Performance Center in Raleigh and he had Mark do a whole slew of exercises to try to pinpoint the problem. One exercise in particular Mark obviously could not do, and that's when he knew Mark had sprained the ankle.

So, no more gymnastics for a couple of weeks. He has to walk slowly and not jump. And every night we have to ice the ankle and do physical therapy. The good thing is that swimming is ok, so he has been able to continue with swim lessons and fun time in the pool.

Here is a video of him doing his gymnastics.

First Grade End of Year Party at Jellybeans

Some pics from Mark's end of the year party. We had it at Jellybeans, the local rollerskating rink!

The Hokey-Pokey

Mark and his buddy Caleb

!