Wordless Wednesday

Beautiful G

First Outpatient Infusion

Brett's first outpatient infusion of IgG went well today. I was a little anxious since we were going to have to just sit in the infusion room for hours and try to entertain Brett. He has had 2 or 3 IgG infusions in the past, but all have been inpatient, so I wasn't sure what to expect.

Brett looks a little rough after finally getting the PIV. This was taken at the beginning of the treatment.

We arrived around 9:30am and we finally got around to inserting the peripheral IV line around 11:00. The first attempt was successful but then failed. The second attempt was also successful, and it kept. It was in his right arm, and the "no-no" (Pedi-wrap) is around his arm to cover it. After all that ordeal, Brett was pretty tired and ready for sleep. The room is full of recliners and everyone has their own personal TV, which was pretty cool. I meant to take a picture of the room, but I forgot - so maybe next time. As you can see, we are not in a recliner- we got an adult size gurney. Brett was ready for a nap when the infusion actually started around 11:30. The nurses helped make us comfortable. We slept for 2 hours, and the infusion was done! And unexpected treat for me!

I am praying (and making lots of calls) that we get on the Operating Room schedule soon and have a central line put in before his next infusion so that he will not have the trauma of the attempted venous access again. His next infusion is scheduled for October 19.

*Breathe*

Brett's vest arrived this week! Click here to read my original post describing this device. It helps with airway clearance, which must be performed 2-3 times a day, every day, on someone who has CF. Until now, we've performed manual "Chest PT" several times every day. The way it works is that the hoses you see connect the jacket to the main machine, which sends air through to inflate the jacket. The jacket then vibrates and compresses at a high frequency and at various speeds and intervals to loosen the thick mucus from the airways.

Today was the first day we used the vest twice. He doesn't seem to mind it - and this afternoon he was relaxed enough to fall asleep on his daddy's lap while he got his airway clearance. I'm thinking of continuing the manual airway clearance at night because he usually goes to sleep and I put him straight in the bed. This vest will be a nice break from manual therapy every single time. It will also be nice to be able to count on the consistency of the quality of airway clearance when other people are responsible for the treatment. Also, when Brett is older, it will be very important to him because it means that he can be independent from us and still be able to get his treatments. It means he will be able to live away from home on his own and take care of himself without having to depend on another person to give him therapy.

Although it doesn't reduce the amount of time we spend on it (still 30 minutes for each session), it shakes all the lobes of the lungs at once for 30 minutes, versus us spending just 3-5 on each single lobe during manual PT. Therefore, it's very efficient and it's been proven to reduce hospitalizations for those who use it regularly. This device is going to ease the rigors of Brett's care quite a bit, and make our lives easier. We are very happy about that! Tomorrow he gets his first IVIG infusion.

Wordless Wednesday

Ok, a few words. What a wonder is God's creation!!

Celebrating 13 Years Today!

Rob and I were married on September 13, 1997. Today we are celebrating our 13th anniversary! Last weekend we had the opportunity to take a few days alone, so we went to Asheville, NC to celebrate.

The mountains were so beautiful. I love sunflowers, so I just had to stop and take this photo of the field of sunflowers turning toward the sun with the mountains in the background.

The last evening we had dinner at The Inn at Biltmore. It was wonderful!!

Special Dessert Message from the Chef at The Dining Room at Biltmore Inn

Our Little Neatfreak

We never would've thought it possible for a neatfreak to come out of this family, but it appears we may have one on our hands! Gantt puts everything away! That's normally a good thing, but he puts EVERYTHING away, and in such random places that it's hard for us to find things! We're not sure if he's being neat or if he just wants to hide things just for himself. Here are some of the things we've found:

Toy in the kitchen cabinet

Brett's inhaler and the cinnamon sugar in the drawer

Anakin Skywalker in Mark's sock drawer

Caught him in the act this time!! Good thing, because this is Brett's special feeding therapy spoon.

Rearranging the refrigerator to his own liking

We love Gantt!

Sept 8 Clinic Visit Results

Brett saw his GI doctor, pulmonologist, and dietician this past Wednesday at UNC. He gained 60 grams in 2 weeks. This is less-than-stellar growth; however, in the CF world, sometimes just not losing any is counted as a success. We were slightly encouraged by the weight gain, and no major changes were made to his feeding regimen - other than always trying to get him to eat more.

His pulmonologist thought his lungs sounded fantastic- in fact, the best he thinks he's ever heard them in Brett's entire life. This is great news! It has been nice to enjoy a couple of weeks of wellness. I thought it was going to be a relatively non-invasive visit, but I forgot about the usual deep throat culture and the bloodwork. Always bloodwork. They especially wanted it this time since he seems well. This helps to have something on file with which to compare "sick" bloodwork. We've never really had that before since he's never really seemed completely well. Since Brett does not have a Broviac or a PICC right now, he had to have all the blood taken peripherally, which this time meant 2 sticks. The first in his arm clotted off, so we had to start all over again - restraining him, using the tourniquet, finding a vein in his hand, getting access, then seeing if the blood would flow. It did the second time, but veeeeeerrry slowly. Thirty minutes and 7 vials later (small vials), we were finished and could go home.

The clinic visit was 4 hours long, but went well since Brett is feeling so much better.  This period of wellness may be short-lived, though, since his initial bloodwork results showed that his IgG level is plummeting again. His last infusion was during his last inpatient visit - the beginning of August. The high level of IgG may even be what has caused him to be able to stay well for the last month or so. But now that number is less than half of what it was even 2 weeks ago. At that rate, he would probably get sick again soon and have another hospitalization. Right now they are looking IVIG therapy**.

Should we and the doctors decide on going forward with this, there will be logistical issues facing us - frequent use of a blood product, hospital admissions or "outpatient" hours-long visits, and probably most importantly, venous access. It can be done peripherally to start off with, but that is of course not ideal for the long-term. They are thinking without the frequent IgG infusions, he'll probably be sick and hospitalized a lot of the winter. For now we will be seeing his immunologist soon, and will be discussing access options with his surgeon. So long for now!


**(Intravenous immune globulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months.)

Hello, September!

I can't believe it's already September 8th! And I can't believe it's been 11 days since my last post. As usual, our family has been very busy. I don't enjoy being very busy. I try to protect our calendar fiercely so that we can enjoy downtime and freetime, and so we're more flexible when our plans have to change. However, it is truly amazing how the calendar sort of seems to take on a life of its own.

Is that a nugget you're eating?

Between Rob's sometimes crazy work/travel/hockey schedule, Mark's school and homework schedule (special days, parties, field trips), various appointments (for all 5 of us), therapies for Brett 3 days a week (they come to the house, yay), things can get pretty busy at times. And that's not even mentioning the daily therapies that must be performed on Brett - those are a given.  Mark is only in one extra-curricular activity, soccer, but it takes one evening and every Saturday morning. Also, in my quest to do something good for myself, I've committed to an exercise class called "Boot Camp" 2 days a week and tennis lessons one day a week. I'd love to play tennis more - I'm really enjoying it - but right now I feel as though I'm lucky to be even doing it at all. Without my "assistant," Erica, I definitely wouldn't be able to. We live by the clock, which although can be binding, in other ways it's freeing to have that "flexible routine" because everyone knows what comes next and what to expect. Now if I could just get laundry on a schedule and dinner on the table...

As for Brett, he is doing MUCH better. He looks and acts much healthier, and many people have commented on it. It seems as though he has gained weight, but we'll see for sure at our appointment today. At the last clinic visit we decided to advance his feeds and we made a few dietary changes. He did end up testing positive for enterovirus and rhinovirus (common cold). Look for a post tomorrow regarding the results of today's clinic visit.

OK, SORRY ABOUT THIS FORMATTING CRAZINESS!!! It's happening when I text my posts. I'll fix it soon!!

Home One Year Today

A year ago today, we brought Brett home, after spending his first 149 days of life in the hospital at UNC Chapel Hill. It was one of the happiest days of our lives, because we truly did not know whether this day would ever come. Brett's cystic fibrosis threatened his life before he even had a chance to live it. We were truly grateful for just one day with him, and even more so each day since. Our experience with Brett has changed the way we think, the way we live, indeed, who we are. We don't miss the simple blessings anymore. No longer will I miss the blessing of all my children sleeping under the same roof at night. Or going to the pool, or attending Mark's soccer game, picking Mark up from school myself, or just hanging around the house. When the privilege of being with your children in the daily routine is taken away for awhile, you realize that's just what it is - a privilege. Although we have our times of craziness, busy-ness, and physical fatigue, we never forget to cherish every single day we have with our loved ones.

The Vest

One of our appointments on Tuesday was with the physical therapy department, to try on the vest, which most people who have CF use at least some of the time for daily airway clearance. If you'll remember, we are doing manual airway clearance 2-3 times a day for about 20-30 minutes. This vest will take the place of that most of the time. It will take the same amount of time, and we will still need to sit with him while the machine is working, but we won't necessarily have to experience the wrestling match - which is what it has become - every single time he needs airway clearance. It's not that he dislikes the manual therapy, he just has so many other things he'd rather be doing!! Furthermore, as it is now, we are only clapping each of the 6 lobes we do for 3-5 minutes. This machine provides the compression/vibration for all the parts of the lungs for 20-30 minutes.

The therapist showed me the 3 different machines I could choose from, and she demonstrated all of them on herself. I chose the one that is pictured, and then we tried it on Brett. He wasn't feeling his best, so I wasn't sure how he would react. He just curled up against my chest and kept sucking on his pacifier like nothing was even happening. Therefore, I said, "Order it!" No word on how long the process will take since it has to be approved through our insurance company. If you'd like to know more about the process, you can read about high-frequency chest compression below.

High-Frequency Chest Compression


High-frequency chest compression (HFCC) is widely prescribed for patients with numerous diseases and conditions that compromise the body's ability to clear secretions from the lungs.


HFCC works by administering rapid but gentle compressive forces to the chest via an inflatable jacket. These "compressions" increase air flow within the lungs to loosen, break up, and help your body mobilize and clear those secretions.


After starting HFCC therapy, most patients notice:
* easier breathing
* fewer respiratory infections
* greater exercise capacity
* fewer visits to the clinic
* reduced hospitalizations

A Long Day at UNC

After yesterday's unscheduled visit to UNC (an hour drive both ways), I got home in enough time to help Mark with homework then it was off to soccer practice! After soccer practice, Rob and Erica took the boys to get dinner (drive-through at Chick-fil-A!) then home and I went to 2nd grade parent orientation at school. By the time I got home, Rob had already left for his hockey game (they are in the playoffs again - woo!). It was after 10 PM before I got Mark to sleep, and then Gantt woke up! Ended up just putting him in the bed with me and hitting the sack.

In clinic yesterday

Today we had 4 scheduled appointments at UNC - physical therapy, pulmonology, nutrition and gastroenterology. After the docs looked at Brett yesterday, they decided to do a throat swab and a nasal swab - to test for bacteria and for viruses. He was so listless and lethargic, he hardly even had the energy to protest much. They also ordered some blood tests, but before they did them, they made a courtesy call to Brett's gastroenterologist (GI doc) to see if she wanted to order any tests since they were already going to be drawing blood. That is one thing I like the most about this hospital staff - they always work together to care for the patients. Today we had his pulmonologists, GI, and nutritionist all in the same room, discussing Brett and what changes to make in his care regimen. It is a very effective way of doing things in a system (American healthcare) that oftentimes is the farthest thing from effective. Today Brett is feeling a bit better, but I still wouldn't be surprised if his viral panel shows that he does have a virus. If this were the case, we wouldn't treat it unless he developed some respiratory distress.

New formula - yay!

The blood tests came back great - they mainly checked white blood cell count (if this number was elevated it might suggest infection), CRP (inflammation), and IgG (immunoglobulin). The IgG is already falling since his last supplemental infusion.  All the tests the GI doctor wanted were surprisingly good - showing that he is in fact absorbing his nutrition pretty well. Unfortunately this was the 5th visit with weight loss. However, he just finished his steroids last week, so much of the weight loss is due to losing the water weight the steroids made him retain. Since we haven't increased the feeds in quite a while (and before he started crawling and moving around so much all day, burning up calories), we decided to increase the rate of the 20 hour feed. Also, we will be switching him from Pregestimil infant formula to Peptamen Junior toddler formula. We hope he tolerates it well. For us, this means in a couple weeks we will be DONE mixing formula!!!! Yeah!!!

*Breathe*

It's been a challenging few weeks! This past week was a lot better, but it was still a challenge as Mark started his first week of school and our new nanny, Erica, began her first 40 hour week. She worked quite a bit over the summer and she's doing great!

Here is Brett's most recent PICC line in his arm. For his daytime infusions, we'd hook up the syringe and pump and put it in his backpack so he could keep playing while he got the treatment. It worked out pretty well.

Last Sunday (August 15), I e-mailed Brett's doctor to ask if we could stop the IV antibiotics. It was getting really difficult for us not to get as much sleep since you have to stay up real late and now we have to get up at 6 or 6:30 all the time. He said that would be fine if I thought Brett was not coughing as much and he was "back to baseline". It had been 17 days of antibiotics already. I thought so, so we stopped. Since he still had the PICC line, we still had to flush it everyday, though, and the next Tuesday night I couldn't get it to flush. I called that night to let the doctor on call know, and we went to clinic the next day (last Wednesday, Aug 18). The good thing was that Brett's doc got to actually see him and agree with me that he seemed well enough to come off the antibiotics. Since we came to that course of action, they just removed the PICC there in clinic instead of trying to get it to work again.

This is the wrap we put over the PICC line for bathtime. 

The bad thing for us is that now that Brett has had pseudomonas, he will be treated as if he always has psudeomonas growing in his lungs. For right now that means going back on TOBI for the rest of the month. (TOBI is the inhaled version of the antibiotic Tobramycin. When Brett gets IV antibiotics, it's usually a combination of Tobramycin and Cefepime). It's basically one month off, one month on. We are having an extremely hard time with it. I don't know what to do to make it better. It's the time commitment of one hour in the morning (20-30 minutes chest PT then 30 minutes TOBI neb right after) in addition to all the other things we have going on in the mornings, and the screaming all the day through the 30 minute inhaling. We can do the other neb (Pulmozyme) in the afternoon if we find time for that, but if we don't and we have to tack it to the night time routine, he's got to do the Pulmozyme neb for 15 minutes, chest PT for 20-30 minutes, then the TOBI neb for 30. This also falls during the time we are trying to get the other 2 kids to bed as well. We don't really have any options as far as timing goes because the TOBI doses should be 12 hours apart, ideally. He's hardly even awake 12 hours, truthfully! I'm told that 10 hours is the very least the doses should be spread apart.

Everything seemed fine until this weekend, when Saturday Brett seemed just a tiny bit under the weather. By Sunday (yesterday, August 22), he was sleepy and lethargic all day long. We do have an appointment tomorrow, but based on the way he felt I thought it was not wise to wait that long to see the doctor. Again I called the on-call doc and she made us an appointment for this morning around 10:30. Today he's actually acting a bit better. He's so complicated! The good thing is that they all realize how complicated and tricky Brett is too! I'll update when I can!

First Day of the Second Grade

Mark started 2nd grade today! We can't believe it's already his 3rd year at NRCA. He had a great day and is looking forward to the school year!

A Sofa Full of Sons

This is me with my friend Emily and all our boys! We met when Mark and Caleb were in kindergarten together and  became best friends. Now we also attend the same church. Both our lives are very busy, but we try to get together when we can. And we love our boys!

First Dentist Visit!!

Back in April the twins had their first dentist visit at Carolina Pediatric Dentistry. Yes, we take them early. Mark has had plenty of tooth drama, so we like to get a jump start on things. They did not enjoy it, of course! I took them on separate days. I didn't think we could handle the stress of having both there at the same time.

You may have noticed in previous photos of Brett that his teeth are very yellow, and in some spots almost brown. Dr. Johnson's technical name for this was Enamel Hypoplasia. Don't quote me on this, but she said something like 33% of multiples have this, 33% of babies born prematurely have this, and 33% of CF sufferers have this. Not great odds for Brett, no doubt. But really, he's had sooooooooo many antibiotics in his first little year of life. And they aren't oral antibiotics - they're all the IV, big-gun type drugs. We are supposed to be taking extra care of Brett's teeth because his teeth are very susceptible to cavities. The good news is that these are of course his baby teeth. We have a second chance with the permanents. Below is a more exact description of EH.

Enamel hypoplasia (EH) is a tooth enamel defect that results in a tooth or teeth having less than the normal amount of enamel. The missing enamel is usually localized, which results in small dents, grooves or pits on the outer surface of the affected tooth. This makes the tooth’s surface very rough, and the defects often stand out because they are brown or yellow in color. In extreme cases, the tooth enamel is missing entirely, causing the affected tooth to be misshapen or abnormally small.

Enamel hypoplasia is typically caused by malnutrition, illness, infection or fever during tooth formation. Some medications can also affect the teeth that were developing at the time of dosage. Environmental factors can interfere with tooth formation as well, such as being exposed to toxic chemicals at a very young age. In many cases, the exact cause of enamel hypoplasia cannot be determined.

Gantt's teeth are immaculate and so white. Since this visit, he has chipped his top two front teeth. The dentist we saw didn't see any evidence of nerve damage both visually or on the x-ray. We have yet to see our regular dentist about it, but I am hoping she will be able to file them down some since they are extra sharp.

Brett's Thumbs

This week is a really rough week for us as we don't have a sitter to help us. There has been a lot to do this week to get ready for school to start next week - Mark has had several appointments, and tomorrow night is open house at school. He will then find out who his teacher will be and which students will be in his class. With all this going on, I've decided to just post a video or photo every day that I've already uploaded because I won't have time to do actual blogging. I'll try to get back on schedule next week. Here's a really strange thing Brett can do with his thumbs!

New Beds

Mark and Gantt have new bunkbeds! Mark has always wanted a "roommate" and Gantt has been having a hard time getting to sleep in his crib. We especially like the stairs going up to the top bunk, not just a ladder. Each step has a drawer underneath as well. The part on the left has a desk so it's a great place to keep Mark's Bible and before-bed books. We put sidereails all around the double bed below for Gantt to sleep on and Mark is bunking on the top. So far they love it!

As for Brett, he's doing pretty well. We have 13 more days of IV antibiotics to go. They start at 7AM (then flush at 7:30), another at 10:30 AM (then flush at 11), one at 3PM (and a 3:30 flush), then the night-time ones at 10:30PM then 11:00PM - then flush at 11:30. I'll do a more complete update on him next Monday.

Wordless Wednesday

Can I have a Kiss?

"Double" Chest PT

Gantt doesn't want to be left out of anything! Sometimes Chest PT looks really fun - they had a great time during this one!

Wordless Wednesday

So happy to be home! 

Hospitalization #9 - Day 6

Going home today! This is the difference some IV fluids and antibiotics along with an infusion of IgG can do for Brett. The first pic was taken on day 1 and the second was last night, day 5. He's all ready to come home and be with his family again. MidCarolina will be delivering his medications to the house so we can keep his IV schedule going like clockwork. More updates on Brett's progress soon.

Hospitalization #9 - Day 5

Brett gets chest PT by his favorite tech, Janay

We're in the last stages of this hospital visit - gearing up to go home tomorrow! Not sure how long Brett will be on IV antibiotics at home, but it will probably be another week or two. Not a fun thing to do, but much preferable to staying here for the duration of the antibiotics. He's feeling much better, although a little crazy because of the steroids he's taking. Look forward to reporting good news tomorrow. 

Hospitalization #9 - Day 4

Today Mark and Gantt and I visited Brett and GG at the hospital. We spent 2 hours visiting and playing...and eating. Mark loves "hospital pizza." As you can see from his smile and his color, Brett is feeling much better. Seeing his brothers perked him up a lot, too.

Playing in the crib together

Getting tickled by Mark

Gantt eating spinach ravioli

Brett eating sweet potato puffs

Mark...always a Jedi

Hospitalization #9 - Day 3

Reinforcements have arrived!!! GG made it in today from Atlanta and took over for Rob at the hospital so we will be able to be at home together for a day or two. We're so grateful to her for coming to help out whenever we need it, and grateful that my dad is gracious about being without her for the week so she can be here.

Not much to report today. Brett is just getting the IV antibiotics and we're waiting out the weekend. He is not feeling much better yet. He's distressed about being here - we can tell because he wants to be held constantly and he cries when we even go out of the room for a second. Whenever the door opens he starts to cry because he is just so tired of being messed with. I can certainly understand how he must feel, and why he just wants mommy or daddy or GG to hold him. He did feel well enough to do a little playing in the bed today. We don't have any toys there right now, so he improvised a little with a wisk and a bowl. It's not a terribly exciting video, but cute nonetheless.

Hospitalization #9 - Day 2

Today was uneventful except for the good news that the team was able to get a PICC (peripherally inserted central catheter) in Brett's arm. As I said yesterday, this is preferable to a Broviac because there is a smaller risk of infection, and it can removed at home by a nurse when his treatment is completed instead of having to get it removed surgically. This is a big deal because it was thought he might be too small to get one. It's Brett's first PICC - he's had 3 Broviacs before this.

This also means that we didn't have to wait until Monday to get this line in, meaning our stay will likely be a good bit shorter. Now that he has been on his IV antibiotics (Tobramycin and Cefepime, in case you're wondering), they will have to draw blood at certain hours after infusion to "check the levels" - that the dosage of medicine is in fact the correct dosage for his bodyweight. Too little and it won't be effective, too much and it could result in hearing loss. Since he's been on these antibiotics 2 or 3 other times, they have a good idea already of where to start. If the levels are perfect the first time, we may be able to get him home early next week. If they are not, it usually means waiting another 36 hours to try again....

Praying we'll be able to bring him home sooner rather than later!

Go, Gantt, Go!

Gantt took his first few steps over the weekend, and now he's walking so much! He is too cute!

In other news, he hit his teeth against the bathroom tile the other night and chipped his top two front teeth. I was upset because his teeth were/are so beautiful! I was afraid he would have to lose them, but the dentist feels pretty confident that there is no nerve damage and that the teeth will be ok. Maybe we'll be able to file them down some in a few months so the edges aren't so sharp. You have to look kind of close in this photo, but if you do, you can see the damage. Poor baby!

Hospitalization #9 - Day 1

Back in the hospital again because Brett just hasn't been improving. His cough has worsened and his breathing still remains labored. Talked to the doctor the last couple of days about whether to come in, and last night decided that he should come in today. Everyone agreed that he needed fluids and IV antibiotics. They saw us in clinic and we got another x-ray, which does show even more improvement than last Friday's, which is encouraging. We got an IV placed in clinic, got a separate blood draw for various tests, and started the fluids. While we waited for a room, Brett slept on my chest for about 2 hours. He was feeling a good bit better after the nap and the fluids. We got a room about 4:00 and made it through all the admit procedures. I've unpacked and finally had something to eat, but then his IV came out. So we're wanting to get settled in for the night, but I know they are coming to put another one in sometime tonight.

The PICC team is going to look at him and see if they think they can place a PICC. I really hope they will look at and maybe do it tomorrow, because if we got a more permanent line placed, he could go home early next week probably. If they don't do it tomorrow, it won't get done until Monday. The PICC is preferable to another Broviac because there is less of a risk of infection, and it can be removed by a home health nurse when we are finished with it - it does not require another surgical procedure for removal.

Wordless Wednesday

Double Chocolate Shakes = Happiness

...Finding What Works

Love those brown eyes!

We finally figured out something that works to keep Brett still during his long treatments - watching BabyTV on the iPhone. It's difficult to watch regular TV because it's all the way across the room and you can't hear it over the compressor no matter how much you blare it (and usually the other kids are trying to go to sleep, so that's no good). Then we saw that we could get a Baby TV iPhone app that lets him watch episodes of his little shows up close and be able to hear it over the compressor as well! 

The viral panel (nasal swab) we did last Friday when I took him in tested positive for rhinovirus again (the common cold). Again, none of us in the family or regular caregivers have been sick. He's still breathing fast and working hard to breathe, but still feeling good. We're going back on the oral steroids for 5 days to see if it helps him over this virus. If he worsens, it may mean going back in the hospital.

Brett taking TOBI and watching BabyFirst TV

*Breathe*

Oh, TOBI. We now have a love/hate relationship! I love it that it appears to be working! I hate it that it takes so long and we have to do it twice a day. Also, the ideal time between doses is 12 hours. Therefore, we have to do it as soon as he gets up and right before he goes to bed. The TOBI is an inhaled antibiotic designed to work against pseudomonas. Using the compressor we have, he has to breathe the medicine for 30 minutes. The TOBI must be done after airway clearance (chest PT), so we're pretty much making him sit in the chair for an hour morning and night.This is in addition to Albuterol in a metered-dose inhaler, once-a-day Pulmozyme treatment which lasts 15 minutes, and Flovent also in a MDI.  Sometimes it takes 15 minutes just to prepare the medicines, not to mention all the washing and sanitizing of the equipment and syringes.  At 15 months old, and he's got his parents sticking stuff on his face all the time. He'd rather be doing something else. If not for the g-tube, he'd have us forcing all his oral meds down, too. To some others who have CF or other CF families, this regiment might seem fairly "easy." But for us it's quite an adjustment.

We took Brett in to clinic Friday afternoon because he developed a fever after his shots, which is normal, but his breathing rate was 80-90 times a minute and his sats started getting pretty low (87-89). After an Albuterol treatment and 20 minutes of airway clearance, the sats improved to 92-94. He still felt fine during all this - we were really just being cautious. Brett is tricky, and you never really know what is going on with his body. It's like playing detective. He got a chest x-ray which looked improved from 2 weeks ago! That was reassuring that the TOBI and Cipro appear to be effective working against the psuedomonas. Hopefully that is really the case! He also had a nasal swab for viruses and a throat culture. These are easy tests that are pretty much routine and can give us good information at times. Otherwise, we're just hanging out, doing the meds for 3 weeks, then off for 3 weeks, then go back for another bronchoscopy. Here are the meds he's on now.

Enzymes - 18 capsules/day

Prisolec - 2x/day

MCT oil - 2x/day

Vitamins - 1x/day

Probiotics - 1x/day

Actigall - 2x/day

Baclofen - 3x/day

Zinc - 1x/day

Cipro (oral antibiotic) 2x/day

Potatoes in g-tube 3x/day

Chest PT 2-3x/day (20-30 min each time)

Pulmozyme 1x/day (15 min)

Albuterol 2-3x/day

Flovent 2x/day

TOBI 2x day (30 min each time)

Table Salt

20 hour Tube feed - still wears the backpack most of the day

Total Time spent managing CF:  4 hours

15 Month Check ups

Twins at 15 months

Last Thursday we had Brett and Gantt's well 15 month checkups. This was the last time I'm taking them both at the same time! It was crazy, even with 2 people!! We saw Dr. Davis at Wake Forest Peds, and Gantt got all his 12 months shots. His were on hold because of Brett's natural killer cell deficiency. Brett got shots also, but none that contained live viruses.

Brett weighed in at 21 lbs 3.5 oz, which is in the 8th percentile for his age. His height was less than 5%. However, we are truly encouraged that he is even on the chart at all, because for a while he wasn't.

Gantt weighed in at 23 lbs 4 oz, which is in the 28th percentile. His height is 82%!!! Gantt will go back in a few weeks to get the 15 months shots and our next well visit will be at 18 months.

At the doctor's office