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!!!