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!

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!

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!

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!

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.

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!

Trying This out

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

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!

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!

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.

I let him drive me in the bumper cars about 5 times! Whiplash!!

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!

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!