Tuesday, February 14, 2017

Genetics, Surgery Post-Op, CF Clinic

Since we have been released from the hospital life has returned to normal. We are home doing all of the home duties and we are really adjusting well to the new tubie. Thankfully, we have only soaked the bed twice. Knock on wood. Right now we are doing 10 hour feeds throughout the night equaling out to 500 ml. R is currently doing formula that is a powder which I mix with water a few time through the night. (ElecareJr) He is tolerating it very well other than his body isn't really digesting much of it. He takes enzymes when the fueling begins and is usually sleeping when it ends so he misses out of that enzyme dosing. Since starting the formula feeds his gas and stooling has increased along with odor and mucus in stools. (All signs of malabsorption.) His tubie site looks awesome. It has a small red/strange looking side but the surgery team had no concern about it. I feel it could turn to the dreaded granulation... R is doing awesome lung wise! He is continuing to work hard on keeping his lungs in pristine condition! R literally talks nonstop and his words and phrases are very clear. He enjoys playing games on his tablet and learning new things. He knows many colors, shapes, and can occasionally count to 5! He truly is one amazing kid and I am ever so thankful to be his mother!

We recently went to see genetics. This is the first time we have ever spoken with a genetic team associated with childrens. We have had one encounter with a genetic dr when R was diagnosed who gave us a general overview of CF. I wanted more info so we met with a genetic team and talked about R's mutation and overall gene things. They were super great to work with and answered my questions the best they could. Unfortunately, we do not know much about R's mutation. We know where it is and what the error is but as far as knowing details on others living with we do not. His mutation is not very common at this time and there isn't much clinical knowledge on it. Darn. I know that CF is different for everyone but knowing what to expect makes it much easier to digest once it occurs. He explained very well what with wrong with R's sequence and it was amazing to hear him teach me more about our genetic makeup. It is crazy how one wrong acid in the wrong location can completely change it all. I didn't get any specific answers about R but I did learn a lot about the genetic makeup of CF and how all that jazz works. It was really great. I loved it.

We had CF clinic and post op surgery appointment on the same day. Clinic went great. R's lungs sounded clear and his tubie site looked good to them. No changes in meds or treatments right now. We got some new neb cups and got to order a more efficient nebulizer so that was a great day! I truly cannot explain how great our team is. They go above and beyond to take care of their kiddos and I appreciate it so much. I love walking into clinic and seeing familiar smiling faces! Knowing the staff and knowing they love your child gives you a peace and a trust that words never could. We are very blessed to have our CF Clinic in our corner... R's weight at genetics the day before was 11.7k and on Wednesday at clinic it was 12.2. So no real major weight gain but we aren't going to be concerned just yet. The tubie and formula are new and his body may just need time to adjust. Plus, with the obvious malabsoption things going on I didn't expect any weight gain honestly. [We left the hospital at 12k FYI] So clinic: Check.

Next was the post op appt with the surgery team. We had a great doctor and he had a great team working with him. They were great to work with and they even came to check on R during the post op appt! The said he looked great and the tubie site had no issues. They gave it a good spin and asked if it flushed good and that was about it. They gave me the option to pick a new tubie since the bard is usually just for placement and then it is changed to another button. I chose to go with the AMT Mini Balloon Button so we ordered it and once it comes in we will go back to the surgery people and get it changed in office. After that we will change the buttons at home when needed. I did ask if they felt the little spot was granulation and they weren't really sure at this time. The spot is so tiny it needs to develop more before we know if that is just how it is healing or if it is granulation tissue.

[GRANULATION TISSUE: new vascular tissue in granular form on an ulcer or the healing surface of a wound. ]
This is common granulation tissue surrounding a tubie button. This is not R ha!


So overall Tuesday and Wednesday went great! No issues at all!! Thank you Lord for a great team and wonderful news!

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