Thursday, December 29, 2011

IVs at home

This is what IVs at home look like. In times past we've had to administer the IVs up to 5 times a day. This round is only 3 times a day - every 8 hours. Here is a picture of Brett's Broviac central line (tunneled catheter). I have also added pictures of the other types to my Broviacs, PICCs, and Ports, oh my! page.


The catheter actually comes out of his skin (called the "Site") underneath the circle, which is called a "Bio-patch." It has some extra antibiotic on it to reduce further infection, mostly used while in the hospital.


This round is only one drug, and we administer every 8 hours. I have chosen 7am, 3pm, and 11pm. Basically, we  flush with saline, hook up the medicine, let it run about 30 minutes, then unhook and flush again with saline and heparin. That way we're in bed at 11:30 at the latest and don't have to get up super early, because this round is happening over Christmas Break from school.

The medicine comes in this pressure-filled ball, called an elasti-ball, or elastomeric ball. To me, this is supremely more convenient than the kind that comes in pre-filled syringes that we have to prime and put inside a very heavy pump that runs on "D" batteries. It looks as if it was made in the 70s. In fact, it probably actually was. 

Anyways, this is great because it's very light. We hook it up to Brett's broviac and put it in his backpack, and he just wears it around for the 30 minutes. At night we just lay it beside him in the bed. The backpack is for his g-tube feed, which is still going for 18 hours a day, so he must wear it around 6 waking hours. Don't feel bad for him, though. The backpack is his freedom from an IV pole. 

Tuesday, December 27, 2011

Student of the Month!

In November, Mark was selected by his 3rd grade teacher to be Student of the Month!
Mark with Mrs. Shelton

Mrs. Shelton chose Mark to be student of the month based on the character trait of Decisiveness. He was recognized publicly at chapel - and it was a surprise to him! He also got to have a special lunch with his principal and other students of the month in November. Below is the essay that Mrs. Shelton wrote about Mark and what she actually read aloud during her presentation that day. I'm not sure I have ever been more proud of my boy that than day!

Decisiveness is a character trait that requires much integrity. To be decisive is to have a heart that purposefully desires to do the will of God. The Bible says in Isaiah 50:7, "Because the Sovereign Lord helps me, I will not be disgraced. Therefore, I have set my face like a stone, determined to do His will, and I know that I will not be put to shame." This means no matter what comes your way, you know which path you will walk.

I have one student in my class that has shown "decisiveness" in such a Christ-like manner. He has decided and set in his heart to follow Jesus no matter the hardships or bad days. He has chosen the right path, and I admire him greatly. He is one who does not desire the "glory" or the "recognition" from anyone, but simply desires to have his heart set on God. he has made one such decision which has granted him this award. He chose to befriend another student in his class who is new. He has tried to include this student in every way he could. One day, on the playground, this wonderful student led his friend to Christ and prayed the "sinner's prayer" with him. He made the decision to be a "soul winner" and a witness for God despite any circumstances around him. He didn't do this to get recognition or any attention. He simply made the right choice. I am so very proud of this student. This is extreme love and God and His angels are rejoicing in heaven over another soul saved. This is what life is all about. This is why I am giving the award of the Student of the Month to Mark Reasoner. God's richest blessings on you, Mrs. Shelton."

Mark also got Student of the Month back in first grade for the character trait of "Love." It was a similar situation - befriending and including the "new boy." Here is the link to that post. What Mrs. Shelton couldn't share in chapel is that while Mark had tried to befriend this boy, the boy was actually not very nice to Mark in many ways. Having such a gentle heart/spirit, it's difficult for Mark when people aren't nice to him. But despite that, once he heard the boy say on the playground that he was going to heaven because he was a good boy, Mark did stand up that moment and share the truth, that no one comes to the Father on his own merit, it is only by faith in Jesus Christ, his Son.  I am not sure how "real" the prayer of this boy's heart was, I am supremely proud of Mark for caring enough to help someone get on the right track. I pray Mark will grow in his faith and will keep that gentle spirit he has been blessed with as a child into his teenage and adult years!

Friday, December 23, 2011

An Extravagant Gift!

My friend, Sylvia Basham, wrote this essay and posted it on her blog, sylviabasham.blogspot.com.  I loved the story and the parallels she drew between her experience as a child and the extravagant gift God gave us when he sent his Son! Have a very Christ-filled Christmas!!

An Extravagant Gift

Fourth grade was a long time ago for me. Forty-one years ago. But it wasn’t so long ago that I don’t remember the gift that year. The year was 1970 and Go Go Girls (not to be confused with GaGa) were all the rage with their long straight hair, miniskirts and tall white boots.



It was also the fall of that year that my dad was sent to prison. Moonshining did not carry a heavy penalty but it was a criminal act to not pay taxes on his sales, so my dad was sentenced to six months in a minimum security facility. Six months of his life meant six months away from his wife and three little girls, of which I was the oldest at the age of nine.

I’m sure my mom was more than a little anxious about how her family would survive. Our house had three rooms, no indoor plumbing, no telephone, a coal heater and was miles up a “holler” away from civilization and even an hour away from her closest relatives. Life was already hard, but now she wouldn’t have any help.

Our basic needs were met and I’m sure government assistance played a part in that. As a little girl, I had no clue the hardship because we were loved and I can’t remember ever being hungry. But it was late fall, and Christmas was on its way.

Honestly, I don’t remember too much about that event in the life of our family, but I do recall getting a huge package that year under the tree. Have you ever had a big package? I can only imagine my eyes as a nine year old, unwrapping a three foot tall very fashionable Go Go girl doll. It seemed so extravagant.

It wasn’t until I was grown that I found out where our gifts came from that year. Remember my dad was sent to prison? For him to be sent to prison, there had to be a prosecutor, someone who presented a body of evidence to prove my dad’s guilt. The prosecuting attorney compiled the evidence and convinced the judge and jury that my dad had indeed broken the law. Someone had to pay.

As an adult I was talking about remembering that extravagant gift I received that year and my mom reminded the information that had somehow escaped me as a child. The very one who ensured my dad was convicted, the prosecutor, also made sure there was a way for our family to celebrate Christmas that year.

The prosecutor’s motivation for doing that was never revealed to me. Even though I grew up and ended up working at the sheriff’s office at the courthouse (oh the irony for someone with my family background), I never got to meet him. Whatever the reason for blessing our family that year, he truly was a blessing, giving us three little girls such extravagant gifts.

And now as an adult looking back on that event, it is to me on some level a picture of what God did for us when He gave us such an extravagant gift in sending His Son Jesus to us.

God, who is holy and perfect, presents the Standard to which none of us could measure up. Evidence of our sin and guilt is apparent when held up to the light of His holiness and righteousness. We have no righteousness in front of Him. Because of our sin and guilt, a sentence has to be served. Someone had to pay for the wrongs that we have done.

Just as the prosecuting attorney sealed my dad’s conviction, then made a way for the little girls to have gifts, so God, whose very existence and character have convicted us, has given a gift that we celebrate each Christmas season. And it truly is an extravagant gift. A precious son who was born to take on the all the sin of all of us in the world - crushing, painful sin that separated Him for a period of time from His father.

As with all human analogies, this one breaks down pretty quickly, so I don’t know if I would even call it an analogy, maybe just a few parallels. It’s just that the generosity of the prosecutor was an act that reminded me how much more God has done that for us.

And if that’s not clear to you, let me continue. Because He is holy and righteous and because we are not, we need an extravagant gift of grace to be able to have relationship with God. Each Christmas those of us who are Christians celebrate the arrival of that package, that extravagant gift. I’m sure you all know that Jesus’ birth is the reason for celebrating Christmas. But what was the reason for His birth?




The reason for His birth was to bridge that gap between God’s holiness and our sinfulness. The payment came in the form of Jesus, not simply by his birth, but decades later from His sacrificial death on a wooden cross to shed blood that would pay for our sins. All sins that have been committed, are now being committed and will be committed. He paid for it already.



And that payment, that extravagant gift, leaves us with a glaring decision. We need to decide what to do with that extravagant gift. I’m sure when I received that 3 foot tall Go Go doll that I didn’t ignore it and I certainly didn’t ask to return it. I’m sure my eyes were wide and that I accepted that gift. I used that gift as it was intended.

I’ve done the same and accepted the extravagant gift that God has offered. A verse that will be familiar to many of you and that many of us learned growing up speaks of this gift. Probably even many of your children know it. It’s one of the things we used to whisper to our kids when we tucked them into bed.

John 3.16 For God so loved the world that He gave His one and only Son that whosoever believes in Him would not perish but have everlasting life.

What a gift! And also what a decision you must make as you celebrate this season. You must decide if you will accept this gift of being rescued. Will you choose to believe that He’s given His life and choose to accept that gift so that you can spend eternity with God?

I pray that is your choice. And I pray that if you have already accepted this wondrous gift that you will join me in telling others of this extravagant gift. Because the gift of Jesus is far more precious than any other gift you could give your children, your relatives, your neighbors or your friends, and it is for sure more precious than any Go Go doll could ever be, no matter if she is 3 ft tall!

Friday, December 16, 2011

Hospitalization #14-Day 4

Going home today! Brett is looking and feeling much better now. 
We are all ready to be home together again. We really feel as though getting him in now was the right decision to stay on top of his health and lung disease. Also, we hope that addressing his lung infection will help him to begin gaining weight again. While here at the hospital we advanced the feeds to a higher rate with a higher calorie per ounce. He has been doing well with this combination so far, just in the past few days. He has gained a whole pound!! Looking forward to a merry Christmas full of appreciation for being together with family!

Thursday, December 15, 2011

Hospitalization #14 - Day 3

Brett continues to do well on his IV antibiotics. We are also trying to advance his feeds so that he can hopefully gain some weight! It's such a blessing to not be on contact or droplet precautions! Brothers got to visit and we had such fun!















Brett may not care for his bed too much, but the brothers thought it was great!...until Mark started adjusting the bed by pushing the buttons and then Gantt got a little freaked out and started crying.
All the boys got to visit the playroom together...
Here's an "Action shot" of Mark shooting the basketball



You really just never know how children perceive events - and I'm sure it depends a lot upon the perspective and example of the parents. Some of the times I've thought of as "bad" or "unfortunate" have turned out to be the things Mark has cherished most. For example, he wrote at school that his favorite Thanksgiving was the one we spent at the hospital. And one of his favorite memories is decorating Brett's hospital room for Christmas and painting his windows. Mark was actually disappointed we got to come home for Christmas last year since he had done so much work decorating! So be good parents wherever you find yourself - it's the relationships that matter much more than locations and circumstances. Merry Christmas!

Wednesday, December 14, 2011

Hospitalization #14 -Day 2 FaceTime!

When we are away from each other, whether when traveling or in the hospital, we rely on technology to keep our family connected.

Gantt was already asleep when we did this FaceTime, but you can see me and Brett in the corner (along with me taking a photo of it with my phone!) and of course  Mark and Rob filling the screen. This keeps Mark a little more engaged than a regular phone call, and for children, actually seeing each other in real time and being able to interact is awesome. Brett and Gantt actually act like they are "punching" the camera and Mark does a "dive" on the other end, just like they play at home. We do this as many nights as we can. It's great fun!

Tuesday, December 13, 2011

14th Hospitalization - Day 1

Brett on Versed--the "I don't care" medicine. Given right before he went back to surgery...
Also, I want to call your attention to a page I created and added today to explain better about the various central venous catheters for anyone wants to know more about the ones I reference. It's located on the right sidebar, and it's called Broviacs, PICCs and Ports, Oh My!

5th Broviac Placement Day and 14th Admission

Brett had surgery today to place a Broviac central venous catheter. All went well with the anesthesia and the procedure. As I am writing this he is sleeping off the anesthesia and we are waiting on a bed to become available. His bronchoscopy cultures from last week only grew staph, so he will soon start the appropriate IV antibiotic. We will start treatment here at the hospital then finish the course at home. After treatment he will return for the Broviac to be removed. This will probably happen after the new year.

Brett sleeping off the meds

Getting his post-placement x-ray. Doesn't he look so small in the bed!

Friday, December 9, 2011

Bronch Day

Today was  bronch day for little Brett. His most recent bronchoscopy was over a year ago. Today's bronch was successful in that everything was done safely with the procedure; however, the doctors saw plenty of secretions and inflammation in his airways that suggest infection and the need to treat with a course of IV antibiotics.

The hospital is full right now, so the plan was originally to do the bronch, take labs, and place a PICC line and send him home until a bed opened. This was acceptable because we have had plenty of experience with caring for and maintaining central lines in Brett. Unfortunately, after 2 attempts, the sedation team was unsuccessful in placing the PICC line. That means that surgery will have to get involved.

The cutest thing today was when Brett didn't  mind getting into the gown but demanded that we put back on his socks and shoes! He wore them the whole time - maybe it made him feel more secure and brave...


This is how he feels when awakening from sedation - probably like he's been hit by a ton of bricks!

Eating crackers, feeling a bit better, and saying over and over "Go home, go home!" I'm glad we were able to.

Since Brett's case is not an emergency, the surgery to place a Broviac central catheter has been scheduled for next Monday, and a bed request has also been placed so hopefully he will be able to be admitted right away after the procedure. This scenario is not such a bad thing for 2 reasons - first, not much happens at the hospital over the weekend and now we can spend it at home with the family, and also the cultures taken during the bronch will have a chance to grow and we can target the pathogens more specifically with the most effective antibiotics. Of course, not every area of the lungs can be cultured, so we pray that the cultures that were taken are indicative of what is really going on in Brett's lungs.



Thursday, December 8, 2011

11/30 and 12/8 Appointments

Brett had a routine clinic visit in Chapel Hill last Thursday, and we discussed various options of treatment for his cough, recent gastrointestinal issues, failure to thrive, and general behavior suggesting that he feels bad.

After talking with Dr. Esther I felt as though we would wait until January and then do a bronchoscopy (what we call a "bronch") to see what his lungs look like. But then over the weekend his cough got worse and more frequent. Also he just acted as I he felt bad, which is often our most important indicator. He just doesn't smile very much, and basically just wants to be held, or sit and watch tv, or sleep. His favorite being all of the above!

Therefore, we decided to call Monday and see about getting him in for the bronchoscopy this week. Today in Raleigh we saw Brett's immunologist, Dr. Hernandez. This was also a scheduled visit, and it just happened that Dr. Esther was there as well. It is always helpful to have any of Brett's specialists in the same room to talk and make sure they are all on the same page as far as treatment. Because Dr. Esther was there I went ahead and signed all the consent papers for the bronch tomorrow in Chapel Hill.

The plan is to do the bronch, place a PICC line, and admit him for his 14th hospitalization. He has not had IV antibiotics in 11 months--that's quite a long time in Brett's world. If for some reason his lungs appear awesome-clear of secretions, infection, and inflammation, we will just come home and await the culture results from the bronch to decide on treatment.

Gantt and Brett playing at the Pediatrician's office

In other news, Gantt is sick as well with some sort of stomach illness. Trying to take care of him and get him better at the same time. Luckily, none of the rest of us have gotten sick yet!

Wednesday, December 7, 2011

Trying This out

I'm trying out the blogger app to see how well it works for me to post from my phone.

Friday, September 30, 2011

13th Hospitalization - Sept 28- Oct 1

We took Brett to the emergency room per his doctor's orders when he was having severe stomach cramps and pain. He had a full work-up complete with x-ray and ultrasound to try to see if there was some physical blockage in his intestines or some scar tissue formation blocking the flow of instestinal matter. 
 Sweet baby sleeping in the emergency room

 You can certainly tell how bad he feels


First time in a big boy bed instead of a crib!

Over the course of several days, he was not allowed to eat as the doctors wanted to "rest his gut." He got IV fluids to sustain him. Nothing happened, so eventually he was given an enema, it worked, and we went home. As of December 13 (when I'm writing this) this has happened twice more at home and we just give an enema when he begins complaining about his stomach hurting. Obviously no one is sure what is going on or why this keeps happening!

He was soooooo hungry once we got the OK for him to eat!

Brett got to do a wagon ride but was very distressed that his riding partner Gantt was not in HIS seat!

Monday, August 8, 2011

Mark's Orthodontist

This week Mark had his 2nd orthodontist appointment. His first was one year ago. No intervention is needed at this time; we are just waiting for his teeth to come in more, so his next appointment is in 6 more
months. His x-rays show that his front two teeth have come together even more, and he is about 2 years
behind in dental development and has 11 more baby teeth to lose!   

Brushing his teeth beforehand - he had to rinse the sink and make sure he got every speck of toothpaste off. I suspect this means we've taught him well, but WHY doesn't he ever do this at home??

X-rays! Last year on the left and this year on the right.

 Yay for Dr Gladwell!

Wednesday, August 3, 2011

Six Flags & Stone Mountain

Thanks to GG, Pop, and Candace, Rob and I were both able to spend some alone time with Mark. I took him to Six Flags over Georgia and Rob took him to the laser show at Stone Mountain.
He also loves the Hanson cars --anything he can drive, evidently!
"Just mom and me"
I told him it would just be us together without any babies, just like it used to be - and wouldn't that be fun? He thought for a minute then said, "Yes, but it's still nice having the babies." What a cute little guy and a great big brother.

He was especially excited to get this Icee and mix all the different flavors! I love this picture.
In front of the carousel - we didn't go on it. Too boring I guess
The view from the Skybuckets
On the train at Stone Mountain - Taffy Teeth!
At the Laser Show!

Monday, July 11, 2011

Independence Day 2011

For the 4th of July ,we actually had a party on the 3rd of July! We did it on Sunday because we put it on for our team members at Chick-fil-A, and since everyone is off on Sunday, everyone would have a chance to attend. Rob had gotten some really great fireworks earlier in the year and we shot them off in our neighbor's open space. Having the space and the set-up to do a get-together of this kind comforatably was one of the reasons we love this house!

Hanging out near the playset

Hockey in the backyard!



Trampoline jumping

A game of football

Getting ready for fireworks to start!






After the fireworks, sparklers!

Mark and Sam Lightsaber fighting with sparklers

Brett didn't mind the sparklers at all!

And Gantt loved it, too! Happy 4th of July!