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.