Saturday, July 30, 2011

Labs... Worse on him or me???

    Thursday July 28, Bryce had to get 2 different labs. The doctors need to know how Bryce is aspirating into his lungs.
    Our first lab of the day was x-rays of his upper GI to see if he was refluxing and to verify that his nissen wrap was still intact. It appears that he is not refluxing within 5 minutes of eating/drinking but his wrap looks a little loose. It is still intact but the doc said it doesn't seem as tight as it should be.     
    This was the worse one of the day! They strapped him down. One strap goes across his head, another one around his chest, and the last one around his legs. He screamed and yelled for the first few minutes.
    It's awful seeing your child this way and knowing that he is scared. I just wanted to unstrap him and hold him.

 Drinking the barium so that they are able to see if he is refluxing. He chugged it because he was so hungry from not receiving his night feeds or breakfast that morning.

 He finally went to sleep after getting something in his stomach.
He fought so hard, his toes came out of his shoes.....

   This is after the upper GI test. He is playing with his dietitian Brittany while we wait for his swallow study test. Brittany went with us because she can't believe that Bryce is swallowing his enzymes at this young of an age. He began swallowing them at 13 months. His enzymes are about the size of tylenol capsules.
 Most kids don't start trying to swallow pills until they are 3.

 A swallow study is when they take x-rays while he is chewing and swallowing his food. Bryce swallows his food good but doesn't chew his food enough. We will now be seeing a speech pathologist to help him learn how to chew his food correctly.
We did impress Brittany, the speech pathologist and the radiologist with his pill swallowing skills that they went and found a couple other doctors to show them.

In other words, Bryce is a rock star in swalloing pills.

OOOO, nice machine!
Not to excited about everything being coated in barium and having the chalky taste.
Finally over and he gets the rest of his string cheese without barium.
The small things in life! ;)

Wednesday, July 27, 2011

Wordless Wed.... Somewhat!!!

This is Bryce at his clinic appointment back on July 5th.... He thinks he is Mr. Cool Guy!!! 
This might be one of my favorite pictures of him.

Tuesday, July 26, 2011

South Padre

Our family vacation this year was to South Padre Island, TX.

    We didn't want to go too far away from home being that it is our first vacation with Bryce. South Padre is about a 4.5 hr drive for us.
    Also, mom and I used it as a test run to see how many extra bags we had due to Bryce's medical needs.  We are planning on going to Disney World next spring!!!
    I actually had all of the kids, Nathan, and my clothes packed in one large suitcase. Then the other 3 bags were Bryce's beat box (vest machine), his compressor and nebulizer, and the last was his feeding pump and supplies for night feeds. As well as an Ice chest for his meds, so I guess Bryce actually had 4 bags.
    We only had one crisis on the trip. I left Bryce's bottle of enzymes at the restaurant and didn't realize it until 11:00pm!!! I called, called, and called again but no one answered. Mom and I rushed over to the place hoping that we could find someone that was able to let us in. 
    Luckily, we found two of the cleaning ladies pulling out of the parking lot. They didn't speak hardly any English. In our English/broken Spanish we got them to understand how important the medicine was and that we really needed them. She had to call the manager and get the code to get back inside. We got them! We hugged them and said "Garcias" a million times!!!!
    From that little adventure, I learned that going forward I am only going to take a  pill case of enzymes with me when we leave the house. :)

 Friday night we went on a Pirate Sunset Cruise... Both Kids had a blast!!

Ahoya, my name is Bryce ARRRGGGHHHH!!!!

Friday, July 22, 2011

Bryce's Medical Update....

CF has not been showing it's face too much in our house so that is why I been too busy to blog... ;)
If you recall, Bryce cultured psuedomonas in the past and we had to begin Tobi. Tobi is a very big pain in the butt. It's an additional 20 minutes to each treatment for that day, which means an additional 40 minutes hooked up to a machine instead of playing like a normal 1 yr old. Bryce does 3 cycles of Tobi, which consist of 28 days on then off for 28 days.
Psuedo is a really nasty bug that can cause A LOT of damage to his lungs as well as shorten his life span even more. The average life span for a CFer is already only 37. Then for psuedo to shorten it even more, just sucks....  Um yeah!!! I was totally not aware of this until last clinic when my respiratory therapist was explaining it to Danielle.
Danielle is my cousin who takes care of Bryce during the day, while we are at work. I had her go with us to clinic so she can get the whole picture of how serious CF is. It is so hard for people to understand since he looks healthy. I think she left there with a totally different perspective of why I have her do the stuff I do and how serious this is.
The last 4 clinic visits, he did not culture psuedo in his throat culture. Due to this trend, clinic decided that they wanted to do a Bronchoscopy on him to make sure that it wasn't growing.
I freaked out when they mentioned this because of the past experiences we have had. Last time during his bronch, both lungs collapsed and his whole body shut down. This caused us to be in ICU for 4 days then in MIC for another 3 days.
I agreed that we would go through with the procedure IF Dr. Guajardo (pulmonologist) and Dr. Matthews (anesthesiologist) would both be available for it and we were the first procedure of the day. Both of these doctors where there for his first reaction. About an hour later, clinic was able to confirm that both doctors were available and we had the first time slot. Dr. Guajardo is not our "official" clinic doctor but he comes by and says hi to us every clinic visit. I don't think he does that with everyone by the way Lisa, our nurse practitioner, teases him about making sure that they are treating us good.
Bryce seems to have a special bond with the doctors and nurses at clinic. He was their first patient that was diagnosis by the PKU (heel prick test). All of the other babies that they have had were diagnosis because of either constantly being sick or a blockage in their intestine when they were born. Texas did not start testing for CF in PKUs until December of 2009 and Bryce was born May of 2010.
So back to the bronch. Bryce had his bronch on June 15th. The results came back showing a "healthy" number of white blood-cells for a CFer, a little milk, and NO psuedomonas. But Bryce did have another reaction during it. He broke out in a rash from head to toes, his left lung collapsed, and he heart rate dropped. We did not end up in ICU but we did have to stay in observation for 24 hrs.
This may have been the longest 24 hrs EVER!!! Not that he was in bad shape. After recovery he woke up bouncing off the walls and getting into everything! But at night when he would finally get comfortable and in a good  sleep, a nurse would come in and check vitals. Finally at 12:30am, I told the nurse no more that I would call them if his O2 level dropped from 99%. From 1 am to 6 am Bryce screamed "Momma, bye bye. Bye bye Momma."

Since his bronch, we had a follow up clinic appointment. Due to the milk in his lungs, we are now having to do some GI test to verify if Bryce's nissen fundoplication wrap is still intact . As well as another swallow study to see if he is swallowing properly. Hopefully, these two test will help us find the answer on how this is happening.
On a super positive note, Bryce is swallowing a whole enzyme by himself!!!

Tuesday, July 19, 2011

What we have been doing lately...

We have been very busy since spring.... Work is crazy as well as the kids are loving the warm weather. From sun up to sun down we are outside playing. Nathan and I have been working on the backyard this year so that it's self has kept us tied up. Now it's a lot more kid friendly. We finally have grass that is starting to grow but I don't get to water as much as I would since we are on water restrictions. 

Nothing like South Texas in summer!

 We also have been to a couple of different plays at the Magic Theater... 
Then we made a trip up to Boerne to see some of Nathan's family. 
This is their English Mastiff that Bryce was in LOVE with... I believe he is a little over one year old. I have always wanted on of these dogs but I don't want to clean up their messes :)

We have had several play dates with Julie and Reagan...

I suckered Julie to come stay with me and help with the yard, while Nathan went to Canada to watch a UFC Fight.

We have had one trip to the ER with Bryce because he pulled out his g-tube and it closed on us within 6 hours... They had to reopen it.
Plus I am pretty sure if Brianna had CF she would NOT wear this mask. Now she thinks that if Bryce gets to wear one then she does too.

We went to the Watermelon Jubilee this year. Brianna had a fabulous time but Bryce not so much. It was way to hot for him. So after the parade, Nathan and him went to the house.

Brianna and I had a girls day and went to Sea World

Besides all of this, if we are not sleeping we are doing this...

Oh! Brianna can swim now without floaties!! I don't have any pictures yet because I am a little nervous about taking my eyes off of her while I am working the camera but some will come soon.