Hospitalization #12 - Day 4

No real news from today.  We just relaxed and watched some football this afternoon.  I did take him down to the cafeteria for a little bit.  He enjoyed some M&Ms as well as being out of the room!!!

Hospitalization #12 - Day 3

Jennifer is home for the weekend and I am looking forward to taking care of my little man for a few days.  I have several meetings next week, so I will not be able to come to the hospital.

Brett made it through surgery quite nicely.  By the end of the day he felt pretty good.  He was taken off contact precautions so I was able to give him a wagon ride around the floor for a while.  He had a big time flirting with the nurses.  He was blowing kisses and smiling like normal!

They drew more blood tonight to check on other bacteria that may be in his blood.  Nothing definitive yet, so we will just wait and see.  They also had to take out the line that was put in earlier today because it quit working.  They were able to put another line in his other arm.  It is so hard for an infant to keep a line in their arm.

Here are a few pictures from today........

Hospitalization #12 - Day 2

Here we are on day 2 - Brett's blood cultures grew a "gram positive cocci" very quickly. Although it will not be absolutely determined until tomorrow, it is probably the same staph aureus making him septic. He started Vancomycin today and will have his port removed.

Brett is on the operating room schedule for tomorrow morning, so please pray that everything will go smoothly as usual with the anesthesia and the procedure itself. They will place a peripheral IV line in during the procedure that we can use for the antibiotics as long as it lasts. The peripheral IVs tend to fail easily in babies, which is the worst part about not having a central line when you need iV antibiotics. He will need to be treated this way for as many days as possible - they want 5-7 days AFTER they get a negative blood culture. Moreover, Brett will be in the hospital quite awhile. There are various directions his care could take between now and then, so we'll just take it one step at a time.

Our room

 If we have to stay awhile, one good thing is that this time we got a corner room, which is VERY BIG! You can see it in the picture above, and you can see the cool set-up Rob did with our new inflatable bed.

This is the view from our room

One of the most difficult things about having a child in the hospital is actually keeping up with the normal life stuff that doesn't stop for illness - like work, school, and running the household. Just today I dropped Mark off at school, went inside the school to complete re-enrollment for next school year, took Gantt to the doctor (he has pinkeye as well as an ear infection), got his prescriptions filled, went to the insurance company to get more papers needed for school re-enrollment, took Gantt home and got him settled with the sitter, and went to the new house to meet with the designer and the tile people.

Gantt sick with pinkeye and ear infection

After that I drove out to the hospital to relieve Rob so he could "book it" back to school and watch Mark do his special part at chapel today! He then continued on with the childcare and the homework, and the feeding of dinner, and the packing of backpacks and lunches, and putting the kids to bed. We have to tag-team everything.

However, we are so grateful that our home and business are so close to the hospital - especially with us not knowing when we moved here that we would be needing this hospital so often. It takes about 45 minutes to an hour, but there are plenty of families here that live hours and hours away and don't have the luxury of switching off very often or getting to see the kids at home every other day or so. We carefully remember to count our many blessings - including our parents who come up often to help us. Thank you for all your kind words of encouragement and all the prayers going up for Brett. We are grateful for every one!

Hospitalization #12 - Day 1

After stopping antibiotics on Monday, we didn't even make it until our scheduled appointment today at 1:00. This morning Brett woke up with a slight fever, and by 9:00 it was at 101.5. I went ahead and contacted Brett's doctor, and used what I have named "call ahead bedding" (kind of like "call ahead seating"at restaurants!) They had a bed ready right away, so we were able to bypass clinic as well as the emergency room.

When we were admitted, Brett got all the usual tests - blood from his port, peripheral blood from his arm, a viral panel, weight, and 2 rectal temps. The viral swab (which is very uncomfortable) had to be done twice because it was spilled. He felt worse as the afternoon went on, and tonight his temperature reached 103. As soon as the blood culture was taken he was put back on IV antibiotics, so he ought to be feeling better in the next 24 hours. Tomorrow he will probably get another echocardiogram on his heart to check for "vegetation" - settling of the staph infection on his heart. Once the blood cultures show something definitive, the docs will begin discussing a treatment plan.

How Brett's Doing

Brett has been doing extremely well since he was able to come home. He is back to his normal schedule, lasting about 2-3 hours a day including chest PT, inhalers, meds, and breathing treatments.

We have continued the IV antibiotics that were started in the hospital. We had to administer them every 6 hours since Christmas Eve up until yesterday. In the daytime it's not too bad, but we usually go to bed pretty early, so we were getting up at midnight, 12:30, 6 am and 6:30 am to do these. (Since we were on Christmas break, we weren't waking up that early for school). Whenever we get so tired of doing that, we just remind ourselves how much better it is to be able to get it done ourselves, in the comfort of our own home. 

Yesterday was the stop date because his next appointment is tomorrow, and if any live bacteria are still in his system that are just being suppressed by the antibiotic, they will have time to grow. We'll get a blood culture Wednesday (about 48 hours after stopping meds), and wait to see if any bacteria grows in the next 48 hours after that. No bacteria growth will be great, and that's exactly what we're praying for. 

A Faithful Friend

Today we said goodbye to Simba, our loyal pet and faithful friend of 14 years. In cat years, he was 67 years old. We rescued Simba before we were married, and over the years he has been a really great pet.

He has always been really good with the kids.

Here are our attempts to get a good photo of Simba with all the kids - quite unsuccessful, but funny! Rob and Mark are really trying! You can't even SEE Mark in the third photo! These crack me up!

1/1/11

On the first day of the year our friends invited us along to another Carolina Hurricanes game. If you've been reading this blog long enough, you know how we love watching our Canes!

"That's a Carolina Hurricanes goal!"

We beat the New Jersey Devils 5-3. It's always more fun when the kids get more chances to cheer for the goals. A great start to a new year!

Happy New Year!!

Hello, 2011! 

I hope as you are reading this you've had a wonderful holiday - a Christ-filled Christmas and are enjoying this New Year's Day. As for us, we all went to bed last night, and as we did last year, woke up Mark at 11:55 so we could all watch the ball drop on Dick Clark's New Year's Rockin' Eve (with Ryan Seacrest). Coincidentally, both twins awoke around the same time and so we all laid in bed together watching New York's ball drop on one side of the screen and Raleigh's acorn drop on the other.

We really enjoyed our Christmas this year. Brett was allowed to come home on Christmas Eve, which was truly a wonderful blessing. Most of all because he did not end up have to have a surgical procedure which could keep him in the hospital for weeks. Grandpa (Rob's dad) came on Christmas Day and spent the weekend with us, returning home on Monday. Pop and GG (my parents) came Thursday and spent all the way until Christmas with us. They had planned to stay until the day after, but had to leave early because the weather prediction was snow overnight. They didn't want to risk getting stuck in Raleigh or driving 300 miles in even more hazardous conditions. Consequenty, they did make it home safely. Although it didn't start snowing until around 9 pm, Raleigh did have its first "White Christmas" in 63 years!

We planned to spend tonight at the Carolina Hurricanes game. I'm very ready to get back to our normal daily life. Being in the hospital the days leading up to Christmas meant a lot of disruption in our routine. Holidays, while fun, can be a lot of extra work, especially with school out of session. Christmas photos will be up soon!

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.