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!

Friday, July 1, 2011

June 2011 Clinic Visits

Brett has 5 visits in the last 5 weeks to the UNC Children's Speciality Clinic! The good news is that all of these visits were scheduled. We seem to be turning the corner, with 6 months now without a hospitalization, to a somewhat long run of wellness.
Brett showing the stickers he got at Infusion

Our clinic visits still average once  a week, but it's easier to deal with when they are planned "maintenance" kinds of visits and not emergency "illness" types of visits. We think this is mainly due to the fact that Brett does not have a central line in his body at this time. And it looks as if the next time he requires one we ought to be able to get away with just having a PICC line now that he's bigger and he's had several successes with PICC lines under his belt now. The main advtantage to the PICC line is that you only have to be sedated to place it. It can stay in place up to around 8 weeks, then it can be pulled out by a nurse; it does not require surgery to remove.
Brett's June 3, 2011 visit was for his IVIG (intravenous immunologlobulin) infusion. It was a little rougher than usual since the first IV did not work so he had to be messed with a lot more and poked twice. His June 7 visit was to see his immunologist, Dr. Michelle Hernandez. On June 9 he had his second set of infant PFTs, June 22 he saw his GI doc, Dr. Katherine Freeman, and July 1 he had another IVIG infusion. I'll break this information into two posts.
June 7 with Dr. Hernandez - she is the doctor that monitors the values we see in his immune function blood tests. I actually get to visit her in the Raleigh location at Rex! I'm always excited for this possibility since it's a good deal closer with much easier parking and walking in. We are still monitoring his Natural Killer cell (NK cell) function, which has been the main focus on whether or not he has an acquired autoimmune problem or a true autoimmune deficit. There are 2 values she monitors, the natural killer cell count and the NK cell function.
The strawberry band-aid that is on his hand was where we had to put the IV this time

I guess it will just take time to see, but she did say she if he had a true autoimmune deficiency, she would expect to see his function values stay down. It appears that they go up and down. (I think I'm saying this right, but don't hold me to it.) It could be that his immune system just used up all the cells that he was born with since he was so, so sick for so, so long. It may take awhile for his body to build them back up, which is why we keep supplementing his immune system with the IVIG every month. It seems to be working, as even though he doesn't have a central line anymore and shouldn't have sepsis, you might expect that he would've had another lung infection by now. Whatever the case, we'll take it! And we'll just be glad for his relative wellness and enjoy somewhat of a more "normal" life where our family is under the same roof every night and we are able to go places, spend time at the pool, and enjoy a vacation or two. This week we're traveling to Atlanta to see our extended families, who all live in the area. It will be the first time our twins have visited Georgia and the first time many of my extended family will meet them!

Thursday, June 30, 2011

Hooray for Internet Access

We just got our Internet access repaired today. It has been unreliable at best lately! Which is partly why it's been more difficult for me to post this month. So when I get a minute I'll put up some interesting stuff we've been up to recently. Until then here's a cute photo to hold you over!

Summertime 2011

June 2011 PFTs


Pulmonary Function Tests (PFTs) are routinely done on children and adults with lung disease, such as CF, or respiratory problems, such as asthma.  Infant PFTs are a special type of pulmonary function test that is only done in specialized centers.
In infants, lung function testing requires sedation so the child sleeps and is passive during the test. This allows the infant PFT equipment to perform testing since the child is not old enough to cooperate with PFTs. Infant PFTs can be performed very early in life until about 2 to 4 year of age depending on the equipment and size of the child.
Once children undergoing an infant PFT are asleep, they are placed in the equipment with a mask over their mouth and nose. They breath air with oxygen if needed through the mask. Lung volumes and flows are measured while the child breathes through the mask. An inflatable jacket is also placed around the child's chest to help them blow out air.
Since a baby or toddler cannot comprehend nor perform these tests the way older children and adults can, so the baby must be sedated and the exercises must be done for them. Click here to see Mark performing a set of PFTs last year.
These were Brett's second set of PFTs. The first were done in March of 2010 - (you can read about them here), when he was very, very ill and required oxygen. Not surprisingly, he had very low scores. The chief of the division actually told us they were among the worst she had ever seen in an infant. It was unsettling, to say the least. Back then he was put on an extremely long course of steroids, and his oxygen requirement diminished,
Fast forward until June 9, 2011, and here we are again to repeat the tests. It was a good time to test him again because it is always better to go under anesthesia or sedation when you are not sick. First Brett got some Versed to relax him while they inserted an IV line and began his sedation.
Then they put him in this little box :
then put a mask on his face with some putty so no air can escape. For part of the test they inflate his lungs and then put a bladder-type thing on his stomach to force the air out. They can measure the forced expiratory volume this way. It's usually called FEV1, meaning the volume you can blow out in one second. For babies this is measured in .5 seconds as opposed to 1 second. Again, there are various values measured, but for the CF folks, FEV1 is the one most talked about. After it was over, the doctor coached in learning to read this report:

I'm sure those of you who are farther along in your CF journey can decode this easily, and probably explain all this way better than I can, but I am still fairly illiterate when it comes to reading and understanding these values. The GREAT news is that Brett's FEV.5 went up drastically - 40%. This is an incredible improvement. One we are so very happy about and grateful for. But this blessing is tempered with the knowledge that these scores do not mean that his lung disease is not severe. It is. Worse than most CF kids his age. In fact, after last years, CT scan on his lungs, our doctor told me his lungs look like what you would expect a CF teenager's to look like. Today when we were discussing the findings, I got that sick, sinking feeling you get when you talk about your child having an inspid disease like cystic fibrosis, and the description on his report reads, "severe obstructive airway
Most of the time it's easy enough to just not think about it much - just go along with life, do what we can, be extremely disciplined about medicines and treatments. And persevere. And pray. Please join us in praying for our boy's continued wellness. And most of all for a cure, which still looks promising, and quite possibly could happen in his lifetime.