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.