Hospitalization #11 - Day 7

Going home for Christmas Eve! We feel as though we got a Christmas miracle! We are thrilled to be able to take our little man home and celebrate the birth of Christ together as a family - all under one roof. Merry Christmas!

Hospitalization #11 - Day 6

Blood cultures are still negative for bacteria growth for 48 hours now!!! We are so grateful for this! We feel as though we've "dodged the bullet" since we don't have to get the port out right now. Hooray!

Mark came to visit yesterday and we decorated Brett's room.

Mark set up the Christmas tree

Daddy hung the lights

 Mark painted the window

 Love this one with Mark smiling in the background

 Brett is off contact and droplet precautions so he can now hang out in the hallway

The finished window

The finished room

Thank you so much for your fervent prayers for Brett. Please keep them coming as he will have IV treatment every 6 hours for two weeks to try to completely eradicate the bacteria.

Hospitalization #11 - Day 5

Results are in : the blood cultures taken yesterday morning, 24 hours ago, have not yet grown any live bacteria!!! We might be getting the infection under control. This means no surgery this week!

Visit from Jason Michael Carroll

Brett's surgeon is very adamant about trying to treat through this line, because he says Brett's body is getting harder and harder to get central lines into - he's put 5 central lines in Brett, so he should know.We need IV access, so they are going to do all they to keep the port Brett has now. We are super grateful that Brett will not have to be put through that surgery right now and have to have a peripheral IV. After we stop the antibiotics, there is a chance that the bacteria will start growing again, and we will have to revisit this issue. But that will at least be a few weeks away, and a lot can change in that time.

Today we had a special visitor from an up-and-coming country artist, Jason Michael Carroll. He lives in Wake Forest also and he does a lot with NC Children's Hospital. He came by today to see Brett and give him a cute little frog that dances to Christmas music. 

Hospitalization #11 - Day 4

No surgery today. Brett's surgeon wants to see if there is any other way we can take care of this infection without having to remove the port. He has done all of Brett's surgeries - a total of something like 10 times he's done a surgical procedure in Brett's body. The infectious disease people are afraid the staph will start growing in his heart if we don't get the port out. I get both sides. It seems like a no-win situation. His reluctance has bought us one more day, though, for there to be a negative blood culture. It seems if we can at least get one negative, then we might have more options. Right now all we see is 2 options, and they are both bad. I might be able to explain that in more detail when I have more time. But we are praying for God to make a different way where there is no way. I am reminded of that song, "God will make a way, when there seems to be no way, He works in ways we cannot see, He will make a way for me. He will be my guide, hold me closely to His side. With love and strength for each new day, He will make a way." Please pray with us that there will be some way we can treat this infection without having to remove his port.

Hospitalization #11 - Day 3 - Quick Update

Short update - Brett's blood cultures continue to show positive for live bacteria, even though the fever is gone. It is important not to wait too long to remove the source of the infection - the port - because the staph could easily start growing on his heart. It's what they call "vegetation." This could be a life-threatening illness if they do not intervene, so he's scheduled to have surgery tomorrow to have his port-a-cath removed. This means we will be spending Christmas at UNC this year.

A Chick-fil-A Christmas

Santa came to Chick-fil-A Wake Forest last week! If you were there, you know how busy it was and hopefully you enjoyed the day. Our breakfast with Santa is always a hit with the community!

 Mrs. Claus, Santa Claus, Mark, and Rob with the Chick-fil-A cows

Our first Chick-fil-A restaurant was in Brunswick, Georgia.  Rob took over as Operator of that unit in June of 1999. One of our most loved team members, Heather, painted the picture frame shown below and gave it to us that year.  We've displayed every Christmas since. It's so fun to look at those faces and remember the times we had there. There are some we never lost touch with, including Heather. There are other special ones we did lose touch with, but just this year reconnected through - you guessed it - Facebook.

Rob and I with our 1999 team (we're in the back)

Rob and I with our 2010 team

(we are seated in front)

Back then we had around 17 employees and now we have over 60! What a difference 12 years has made, and how richly God has blessed our business by increased sales and great people to work alongside us serving chicken and striving to be good stewards.  Chick-fil-A's purpose statement is "to glorify God by being a faithful steward of all He has entrusted to us and to be a positive influence on all who come in contact with Chick-fil-A."

Hospitalization #11 - Day 3

Christmas tree in the main lobby

A few changes for the better yesterday - Brett's fever is down to 99! Also, now that the fever is down, he can breathe much easier. He's in good spirits and more interested in play. Vancomycin is the drug he needs for this - it's also the drug that he had the adverse reaction to last year, called Red Man Syndrome. Since we know that, they just give him Benadryl before the infusion and run the infusion over a longer period of time. He still gets red sometimes, though, and that happened today.

Brett with mild Red Man Syndrome- notice the red top half of face and white bottom half. The Benadryl keeps this from getting all over his body and itching like crazy.

Brett's second set of blood cultures came back positive again. Has to be negative before he can go home. So we try again today and hopefully it will come back positive on Wednesday.

Rob's holding down the fort at home - went to urgent care yesterday because he was sick. He's taking care of Mark and Gantt by himself this weekend while very sick himself. What a Superdad! I am so thankful for him and the way he loves his boys. I admire him for doing whatever it takes to take care of his family when it's hard without complaint.

Hospitalization #11 - Day 2

 We have bumblebees out our window this time!

Brett is feeling better today! The blood culture that was taken the first night he was here tested positive for staph - which means a blood infection. They took 2 more cultures - one from his port and another from his arm, just to be sure. It's easy for a blood culture to become contaminated, even with a flake of someone else's skin. But these are real, and last night they started him on IV Vancomycin to treat the infection. He's had 3 doses now and is starting to feel well enough to sit up and play a little bit and watch TV. His temperature is down to 99! And he's breathing much better since the fever went down.

Checking out the equipment

f you're wondering how Brett got something like this, here's the way one doctor described it to me. Although his port-a-cath is covered with skin, whenever it's accessed, there is a chance for it to get contaminated. If bacteria is allowed to enter the space there at the port, it can colonize and start an infection. Then if some of the bacteria break loose from that colony, they get swept through the bloodstream and you now have a blood infection. It's a risk of having permanent IV access.

Hospitalization #11- Day One

We so wanted to stay away until January. But here we are again.

Feeling well enough to eat a little

After the infusion yesterday Brett began to run a fever (101.8). We gave him Tylenol which brought the fever down and Brett went to sleep as usual. At 2:30AM he woke up crying, needing a diaper change, but his skin was also extremely hot. His temperature registered at 104.6, and he was breathing very rapidly. I awoke Rob, who drove him to the emergency room where they were able to begin caring for him. I talked to Brett's doctors on the phone, of course, while they were on their way.

He did better overnight - his breathing settled to a more baseline rate but then this morning the fever was back up to 105. The Tylenol every 4 hours is keeping the fever down.  Many labs were drawn to try to pinpoint the cause of this illness - which could just be the virus I had last week. If he had any of that hanging around in his body then got the IgG infusion (which supports immune function), it could've caused his body to begin attacking that virus immediately, hence the fever. We won't know for awhile, but at least he is beginning to feel a little better.

Infusion Day

Brett had his IVIG infusion today at UNC. Brett's weight was UP today, to 20 pounds, 14 ounces.  He played most of the time and slept a little.

Everyone has their own TV

He was in good spirits and played most of the time, sleeping for about an hour. In total, we were there for 5 hours. Yesterday at Wake Forest Peds he got his 2 monthly Synagis injections - an immunization that is given to help protect him against RSV during the winter, which could be devastating to a CF patient. Although I haven't spoken directly with a doctor and haven't seen any actual numbers myself, I heard through the nurse grapevine that labs that were taken Wednesday looked fantastic. I'll probably get the (routine) throat swab results next week.

Pediatric Infusion Room at UNC 

We enjoyed playing Santa as we gave out the remainder of Braelyn's Christmas ornaments. All the recipients seemed to love them as well as the story behind them. Today was our LAST planned visit to UNC for 2010. Let's pray we don't see those folks again until January 5th!

Reading books

Snow In December

Our House

It's snowing! In Raleigh! In December! And on my blog! (ha ha)We were surprised by a two early snows this year! It is rare that we get snow here in Raleigh anytime before January. Last week was a nice little 2 inch dusting that didn't close anything down. Today is kind of a wet, sludgy kind of snow. Pretty all the same, though.

The view looking down the street

The tree with snow on the yard in the background

Ornaments for Cystic Fibrosis

Brett saw his immunologist today at her satellite office in Raleigh. Not much to report - she wants to get a variety of blood tests done before his infusion this Friday. This is fine, except the lab at UNC isn’t open this Friday. Therefore, an extra visit to UNC is in our very near future!  No matter, though, because I will be coming bearing GIFTS!

Some friends of ours have a remarkable little girl named Braelyn who is 10 years old. Two of her younger siblings have cystic fibrosis just like Brett does. Their names are Luke and Lilya. Braelyn decided to find a way to do what she could to raise money and awareness for cystic fibrosis research. She makes and sells wonderful-smelling Christmas ornaments! The money from her ornament sales is donated to the Cystic Fibrosis Foundation (CFF). Since 2008, she has raised over $2,000!

I wish this screen could be scratch and sniff!

Braelyn makes many different shapes of ornaments, but this year I asked her to whip up a personalized batch of gingerbread men – my personal favorite shape - for me to give to Brett’s plethora of therapists, nurses, doctors, dietician, and social workers for Christmas. Not only do they all work hard to give Brett the best care possible, I can tell he’s already got a special place in their hearts as well. It feels good to be able to donate to CFF and have a little something to show for it and give to the special people in his life. 

I’ve printed up a little info about Braelyn and why the ornament is special, and I’m looking forward to playing Santa this week at UNC!

 Click here to visit Luke and Lilya's CarePages website.

Yay for the Christmas season! Boo for the sick season. I was sick all weekend with terrible cough and just overall fatigue. Knowing December was going to be very busy, though, I’ve done a good bit of preparations already so being sick didn’t put me too far behind.

I’m writing this while Mark is having his private tutoring. Last week we had our Chick-fil-A Christmas party and the next night had Mark’s school Christmas program. Mark has 2 hours of gymnastics on Tuesday nights. We had Mark’s 2^nd grade Christmas party. Then Brett has many appointments – one long one last week and 3 this week. Today is Mark’s last full day of school! He has 3 half-days Tuesday through Thursday, then that’s IT until January 3!!

As if all that isn’t enough, we are in the thick of it with selecting everything for our new house. Yes, this madness was self-inflicted!!! The timing has turned out to be quite difficult with all these selections needing to be made during this busy month. I think I’ve spent about 5-10 hours a week on it this month. Rob has spent even more. We are only remodeling the master bedroom and bathroom, and the other 2 bathrooms, but it's still very intense. It’s exciting, but very time consuming, and a lot to have on our minds. We picked out our toilets today between picking up Mark from school and his tutoring an hour later! We hope that the house will be completed by late January/early February. Here's a few of our selections:

Master Bath Tile

Main Bathroom Tile

Boys' Bathroom Tile

Brett's 12/8/10 Clinic Visit

Brett had a good clinic visit last week on December 8th. I had taken him in on December 1st because I was concerned that he was losing weight again. He had lost weight - he was 9.025, down from 9.8 when left the hospital last. (They immediately ordered him to have IV lipids - more on that in next post). On December 8th's clinic visit, he weighed 9.27, and that meant he had gained an average of 36 grams per day since December 1st! That is remarkable growth for Brett. He still has a hard time absorbing the fats from his diet, as will probably always be the case. Our biggest obstacles are being diligent in feeding him the enzyme pills every 3 hours, which he has come to often spit back in our faces, and keeping his feed on for 20-22 hours a day. The pump in the backpack thing is great compared to having to be hooked up to an IV pole all the time, but it doesn't always work so well in reality. It gets pretty frustrating and sometimes we fail to hook it back up to him because we're just so tired of it beeping and getting stuck and having to take it off and prime it again, etc. etc. But we're trying.

On this visit, all in the same room Brett saw his pulmonologist, gastroenterologist, dietician, nurse, and surgery nurse. His pulmonologist thought his lungs sounded like a different child altogether! He thinks we are really getting Brett on the right track. Brett is doing really well with the lungs right now, and it seems as if our discipline in doing treatments is paying off. However, we are so very aware that with Brett, he could still be back needing a hospitalization next week - we just stay thankful for each day of good health.

Brett's next scheduled appointments are December 14th, December 17th, and January 5th.

What's Up Now

I know I mentioned in the last post that Brett would be going back in the hospital on November 21 to have an endoscopy, but he was gaining weight and looking so much healthier that the doctors didn't want to do anything to him unnecessarily. Therefore, we didn't go in after all, much to our relief.  We've been back a couple times for a few problems with his port, but nothing major.

We were so grateful to be home for Thanksgiving this year. We had Rob's dad in town and my friend Meredith as well. I made turkey for the first time - usually I just buy one from Honeybaked Ham. It was actually very good, and the side dishes were good, too. We enjoyed the time spent with family and friends.

The day after Thanksgiving and Saturday we spent time with the cousins who came up from Atlanta to visit. We also got a Christmas tree and were able to decorate most of the house that weekend before Mark and Gantt both got sick with severe ear infections. Mark was almost crying, and complaining about his ear hurting (among other yucky symptoms). That's not like him at all, even when he's sick. I took him to the minute clinic at CVS since it was Sunday. The next day I took Gantt to the pediatrician to confirm the exact same illness. They feel better now, but they are both of course on antibiotics twice a day, so even more medicine to keep up with for us for a few weeks!

Hopitalization #10 - Day 10

Yeah! We made it home last night (Thursday).  We are soooooo glad to be home and have the chance to regroup our life and our family. Right now the plan (although it is obviously always subject to change!) is to admit Brett again on November 21st, and do the endoscopy the next day, then stay another night just to watch him. This is nice because it gives us a week's break. 

Let's Go, Canes!

Oh yes, mooooore hockey! Since GG came to sit with Brett at the hospital, we were still able to do some fun things on Saturday. Earlier in the day, Mark and I were able to go to his school drama club's production of "You're a Good Man, Charlie Brown." We had been planning that for a long while, and I'm glad we didn't have to miss it.

Later that evening, Rob took Mark to another hockey game - this time we won, playing the Florida Panthers. Mark got to high-five Eric Staal 3 times, he got a t-shirt from the Storm Squad, and we got 3 goals he could go crazy cheering for! Also, Marty Reasoner plays for Florida, so he thought it was cool to see a player with his own last name.  

Hospitalization #10 - Day 9

Fun with Daddy

 Brett has gained almost 200 grams a day since he has been admitted! When he came to clinic last Tuesday, he weighed 8.8 kilograms. Today he weighed 9.9 kilograms, so the therapies have been successful in that regard. In pounds, he went from 19lb 6 oz to 21 lb 9 oz. This is only his second day on full feeds and off TPN, though, so we still have yet to see whether he can continue the weight gain without the TPN.

Taking his Flovent

There was some talk about Brett going home today, but it was not meant to be. It appeared this morning he could be starting to not tolerate the full feeds (demonstrated by loose bowel movements which could suggest "dumping" the nutrients), but since this morning that hasn't happened again. Discharge takes a long time, and has to be coordinated perfectly when your little patient has to have medications at specified times - the home health company has to have them at the house, and you need time to be able to get home before the next scheduled medication.

What a big boy!!

 Another issue is that Brett's antibiotics were started at 2 am when he was admitted. Obviously, I'm not getting up at 2am to do an IV, so we have to systematically inch it back toward 10pm, 6am, and 2pm. The other one will probably be at 9:30am and 9:30pm. Also, since Brett's IgG level is already below his target of 500, he can get his infusion while we're still here tomorrow instead of having to come back next Tuesday. His GI doctor still wants to do an endoscopy,  but she wants to wait until at least next week to do it. So now the tentative plan is to stay the night, get the IgG infusion, and go home sometime tomorrow IF he doesn't continue dumping. Let's pray it really happens!

Halloween Cuties 2010

Everyone went Trick-or-treating this year at the Reasoner house. Both babies loved it! Gantt got the hang of it VERY quickly, as you can imagine!!

Brett as Tigger

Gantt as Superman

Mark as Obi-Wan Kenobi

Hospitalization #10 - Day 7

Another night at UNC...

I'm doing a marathon stay with Brett right now - I call anything more than 24 hours a "marathon." Actually, this is only my 2nd overnight stay out of 7 nights, though, thanks to my "angel mother" who did a SUPER marathon and stayed 4 nights!!! Wow!!! Thanks mom!

Brett getting ready to go to the playroom - still on contact precautions

Brett has gained some weight (from 8.8 kilos upon admission to 9.42 kilos yesterday). Tonight the TPN will be turned off and by tomorrow morning he will be at his full feeds. Then we wait to see if he "tolerates" this and continues to grow, or if he starts "dumping" the nutrients  - thus the weight gain would stall. Only time will tell.  What we DO know from this admission's stool cultures in addition to last month's stool cultures is that he is absorbing proteins and carbohydrates just fine - it's the fat that he isn't assimilating.

Brett in the playroom - the poor girl had to roll everything around behind him!

It amazes me that God has designed our bodies just perfectly and that sometimes if one little thing goes wrong, it can create a disaster. Even though we complain that we get fat when we eat too much and don't exercise, we can be thankful that our bodies do what they are supposed to do. When your body can't absorb fat, it's really difficult to stay alive and grow without drastic measures. Also, an important part of cystic fibrosis management is regular physical exercise! This of course means even more calories are burned and less are being used for nutrition.

 A room full of toys, and all he wanted was to push a chair around!!

Brett's med tower

Brett gets over 2,000 calories per day via tube feeds and dietary supplements, and whatever he eats is additional. His special formula is pre-digested, and the extra fat we give him doesn't require pancreatic enzymes to digest. And he STILL has trouble gaining weight. We're thankful for the extra support options like TPN, but hope to not use it for too terribly long. Hope to be able to bring him home sometime this week.