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.

Hospitalization #10 - Day 6

Are you ready for some football??? Mark and Gantt are gettin' ready for the Chiefs vs. Raiders game today. There have never been cuter fans!

As for Brett, there hasn't been much to report the last few days - still on IV antibiotics (and will go home on them), and still on TPN. Every 6 hours they are weaning down the TPN and turning up his g-tube feeds. They say when the feeds are back at 100% and the TPN is completely off, he should be able to go home. At this point my guess would be Wednesday. Otherwise, Brett looks much better and is feeling good. Good enough for chocolate ice cream anyway!

Hospitaliation #10- Day 3

Brett is feeling a bit better today - the antibiotics have kicked in and he's starting to get bored of sitting in his hospital room. Because they ran a viral panel, he was put on contact and droplet precautions, which means everyone has to put on a gown, mask and gloves when they come into his room until the viral panel comes back negative.

What I call "sick eyes"

Some heart-rate drama happened last night - but it seems to be more stable today. The doctors are trying to stay on top of that, but of course we hope that nothing comes of it. He had an EKG which was normal and all other vital signs seem to be normal.

His 20-24 tube feeds have now been reduced to a "trickle" so we can rest his gut for a bit. He's on IV nutrition right now (TPN for those who know about it), and his stay is "indefinite." The doctors really want to try to get to the bottom of this nutrition distress and figure it out before it becomes a nutrition disaster. We're all for that, of course, but it might mean a lengthier stay than our usual 5-10 days. But maybe not, we'll just have to take it one day at a time.

37th Birthday Fun

Me and Mark

Well, as Rob wrote last week, Friday was my 37th birthday. Pop and G.G. came up and took care of the twins while Rob, Mark and I went to the hockey game. We had 3rd row seats, and it was so fun to spend time with just those 2 guys. We love our 'Canes, and they played Pittsburgh, so we got to watch Sid Crosby play as well. I think there were just about as many Pittsburgh fans in attendance as there were Canes fans. We lost but we enjoyed it just the same!

A cool shot

Crosby vs. Staal faceoff - two of the best!

Hospitalization #10 -Day 1

So Brett was admitted to the hospital today. It was only a matter of time. He has enjoyed a 58 day period of "wellness" - i.e., being out of the hospital. This was the longest he had been out of the hospital his whole entire life! We were so glad, but now it's time for an IV antibiotic "clean out," and, unfortunately, some IV nutrition because he has lost so much weight recently. You might have seen on my Facebook that he had gained 450 grams, but all that was lost in the last few weeks. Also, his incision from the port-a-cath placement has been very slow to heal, which also suggests malnutrition - as most of his body's energy is being conserved for survival, not healing. I'll update every day while he's here.

We are reminded of Rob's mother Diane every day, but it's the special days that we miss her even more.  Today would've been her 61st birthday. In our opinion, an earthly life lost too early.

Read Article here

We grieve that she is not physically present in our lives anymore, but rejoice that she is a believer and is at home with the Lord today!

More Halloween

10/29

Hey everyone.  Sorry we have not updated.  We have been extremely busy and everyone is doing great.

Brett did gain weight and his infusion went well.  It is so nice to have a port.

I also want to say Happy Birthday to Jennifer!!!!  - I love you!!  Rob  :)

Update

Seems like I've fallen off the wagon on blogging lately! I've been super busy! Brett is enjoying a longer stretch of wellness than he has in quite awhile. He has not been admitted to the hospital since the beginning of August! We think the IgG infusions are really helping.

Remember this?

 There have been no complications since the surgery to place the port-a-cath, and the incision is healing nicely. Although his bronchial cultures did grow staph aureus, they did NOT grow pseudomonas, so that means we do not have to do TOBI this month. (TOBI is the one that takes an extra half hour morning and night.)Yay!!

Unfortunately, Brett has continued to lose weight steadily here for the past 6-8 weeks. We have increased his feed as far as you can pretty much go for someone his size, and the minimum is 20 hours a day. If we can do 22 or as close to 24 as possible, it's even better. We have also changed his enzymes from Creon to Zenpep. This is an effort to promote weight gain before he has to go on IV nutrition supplements (which we want to avoid).

Brett has been free from IV nutrition since August of 2009, and we don't want to go back there unless we absolutely must. It kept him alive and growing when he couldn't feed, but it's also bad for your organs, particularly the liver. If you've been following for a long time and you remember those days when he was really jaundiced - even the whites of his eyes were yellow - those were the side effects of the TPN (total parenteral nutrition). It's also not the kind of jaundice that phototherapy helps - it's affects the bilirubin indirectly.

Anyway, the main point is that he desperately needs to put on more weight. Please pray for that! We go back next Tuesday for his next IgG infusion and will discuss the next step then.

We Love Hockey!

Rob and Mark on their way to cheer on the Carolina Hurricanes