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

!

Happy 41st Anniversary

My parents have been married 41 years today!

Congratulations Ron and Patsy Gantt!

First and Last Day

Every year since Mark began his first year of preschool, I've taken a photo on the last day of the school year as well as the first day. It has always been interesting to me to see how he had physically matured and changed during that 9 months. So this is Mark on his first day of first grade and last day of first grade, which ended on June 2.

First Day

I didn't mean it to be this way, but it just turned out that he was wearing his Star Wars shirt on the first day of school - what he was really "into" back then. On the last day, you can see Silly Bands on the hearth beside him on the left, which is what he's "into" now. That's kinda cool.

Last Day

Ok, so when I did this post it got me wanting to look back at the old photos. Thought you might like to see them too.

First Day 3 year old preschool

Last Day 3 year old Preschool

I guess I forgot this year, but this was taken the same month 4 year old preschool began

Last Day 4 year old Preschool

First Day of Kindergarten

Last Day of Kindergarten

I packed my first 7 boxes today....

because as if we didn't have enough on our plate already...we're moving! But don't worry, it's just 10 minutes down the road. (Brittny helped me pack these- I can't take all the credit). We weren't actively looking to move, but we became aware of this opportunity because we are friends with the family that has lived here 18 years -give or take a few years, I don't know exactly. They are subdividing their property, so they will be building house next door and we'll be neighbors!

Front of house

We like the house for many reasons. Although it is older, it's a little bigger, and we will be adding to it before we move in. We love that most of the house is a ranch (we feel as though we're not using all that space we have upstairs), and we really love the yard. It has shade and various places that are good for congregating. We have no trees in our backyard. It's a lot more private as well. They have horses, chickens, and various other animals. It's still in Wake County, and it's even a little bit closer to Chick-fil-A. Also, the land is a lot more country-feeling rather than suburban neighborhood feeling. We'll miss our neighbors here, because we've got good ones. However, it is just time to move on. We closed on the house last week, and it looks as if it might be 6-8 months before we will actually move in. Then we'll put our house on the market to sell. Exciting times!

Backyard

The big tree in the backyard and all the neighbors gathered around

Broviac Free!

"Before"

Brett in pre-care, watching Mickey Mouse Clubhouse. (The blue cap is the end of the catheter through which we administer medications and fluids as needed directly into his bloodstream. The tube curls around under the dressing then disappears into his chest where it is sort of snaked through to a major artery.)

The Broviac central catheter removal procedure went very smoothly, as we expected and hoped. They told us afterward that Brett was able to be sedated just by breathing the anesthesia medications through a mask - he did not require any kind of apparatus to be placed down his throat. This is always a good thing, because foreign objects down his throat could easily lead to an infection. This was his 3rd Broviac, thus his 3rd removal procedure.

He was first on the docket for the day, which meant that we had to get up at 4:30am to get there at the time they wanted us there. (And so did our sitter!) That stunk, but the positive part about that was that we didn't have to wait and we were home by 10:30! Many time we are there most of the day and get stuck in rush hour traffic on the way home.

"After"

Broviac-free! Let's get outta here!

In the PACU (post anesthesia care unit), he was smiling, clapping, and blowing "raspberries" at the nurse. I don't think they're very used to babies behaving that way in recovery! I guess for him it's "old hat." For Brett, this was a very minor procedure. After a short albuterol nebulizer treatment, we were sent to recovery and discharge. He was so cute and was clapping when we walked out of the hospital too. We have to wait a few weeks before we can submerge his chest in water, but we can begin to get him accustomed to the bathtub/pool up to waist high now. What a relief! Thank you for the prayers and concern!

It's 7:35 AM, and Brett just went back to begin his surgical procedure. We woke up at 4:45 in order to make it to checkin at UNC at 6:30 The surgeon that has done all Brett's major surgeries, including the one that saved his life on the day he was born) is removing the broviac central catheter today. This is an elective procedure that we are doing to give his body a break from the "hardware" being in his body, as well as the fact that we will be able to put him in the bathtub and the pool. Also, there is always a risk of the line becoming infected. It has been infected twice before. So now that it's summertime, we feel it's pretty safe to go ahead and get it taken out. Its possible he end up back next month needing access again, but we decided that if that happens, then so be it. We will cross that bridge when we get there. So now we wait- probably an hour or two and pray everything goes well in the OR. We are going to be napping in the hospital hallway!

Brett's Clinic Visit & Swallow Study

Gantt and Brett turned 14 months old today!

Brett's check-up at UNC last Wednesday went very well. We saw his surgeon, did a swallow study (x-rays of how the food goes down his throat), and discussed various details about his treatment with his pulmonologist. The main points are as follows:

1. that he is now finished with his IV antibiotics we've been doing for 3 weeks. We're soooooooo glad

2. his swallow study was completed and he has no structural problems in his mouth to inhibit the proper eating process. He just needs feeding/speech therapy and practice to learn to use his mouth and tongue effectively.

3. basically, is surgeon is not comfortable putting in a port until he a bit older and bigger. It is a gray area, there is no real black or white. If it were a situation involving a specific need for a port, he probably would, but it is only a desire. After discussing it for a little while we decided together that we would remove the Broviac central catheter and not replace it with anything right now. This is an outpatient surgical procedure (usually) that is scheduled for tomorrow, June 3. This will be his 3rd Broviac removal and he has not had a problem before. The last time was in December of 2009 and he was able to come home that day. He has been under anesthesia many times and tolerated it fine, but there is always a risk. Please pray that everything goes well as it is expected to and it will indeed be an outpatient procedure.

4. We have been tapering the steroids for a few weeks now. He has not been on any oxygen since the weekend of May 9. So hooray that they have been working for Brett. We ended up doing 6 weeks at the high dose, 3 weeks at the medium dose, then 4 weeks at the low dose. We still have 2 more weeks to go before we will discontinue the steroids. Since the steroids have complicated things, we still aren't sure the extent of his immune deficiency, so for now still no live virus shots. Gantt will probably be able to get his next month, but we will still hold off on Brett until we have more complete information about what is going on in his cells.

5. As far as the swallow study goes, he did not enjoy it! We mixed the barium with his applesauce and fed it to him. He aspirated on the first bite, but not at all after that. Even with the thin liquid he cried with his mouth full of it until he finally took a breath and swallowed, but didn't gag. Part of me wishes that he would've gagged a lot, because I feel like they didn't necessarily get a good picture of what sometimes happened. I am going to ask about this because I wonder if we really got all the information we needed or could've gotten that might help us to treat him better.

Well, you're all caught up now! I'll text updates to this blog and to Facebook as we go tomorrow. As always, thank you for being interested enough and caring enough to keep up with our family.

Mark's Birthday at School

Mark's 7th birthday was May 19, which fell on a Wednesday this year, meaning it was a school day. I think it's actually more fun to have your birthday at school when you're young. He had a special cookie cake - we looked at the designs online, and he chose the fish. Online they're all in that chocolate and white icing, so I copied the shape of the fish and he colored it. Then we went to the cookie store to turn in his "order"! The ladies there thought it was so cute - one of them talked about taking a picture because they had never had anyone get THAT detailed on how they wanted their cookie cake to look! I wish I had taken a picture of it.

When I look at photos like this, I just can't believe how he's growing up. He's such a joy to have in our family.

Twin Time

Lest you think the twins were left out because they didn't go on the trip with us, here are some photos to prove otherwise! They had plenty of fun and love with GG and Pop here to take care of them! (I think GG and Pop had a little fun, too...)

One of very few photos of Gantt without a bottle in his mouth - ha!

And Brett reaching out for Pop's nose, which "honks" when touched! And below is a one minute video of Pop being Pop.