For those of you curious, here is a list of the medications that Gavin must take daily (this list will increase and change over time)
2 'Creon 5' enzymes with every meal (16-20 per day) mixed with applesauce
1/8 teaspoon of salt (we mix this in with his applesauce)
2 treatments of Albuterol through the use of a nebulizer, 10 mins each session
2 sessions of CPTs (chest percussion therapies) about 15 mins each
It has been a difficult couple of days around here. Starting the nebulizers was pretty traumatic for both Casey and myself, it makes it even more real that our son has this horrible disease. The hardest part is feeling like "mom and dad are supposed to make you better when you are sick" but all we can do is make him feel better, we can't take it away for good. I compare it to taking cold medications, they make the effects of a cold feel better but they don't make the actual cold go away. We keep our hopes up knowing that there potentially could be some medication for him in the next few years that will benefit him tremendously, but those are all several years into the future. It is extremely scary not knowing how "severe" Gavin's CF will be. Will he be a kid consistently in and out of hospitals? Will he need a port? Will he need a feeding tube? Will he be stuck with a constant cough? Will he have sinus problems? When will we start to see lung issues? It is so difficult dealing with a disease that differs greatly between patients. We spent nine months so excited for the future, and now there are days when I just dread the future because of so many scary unknowns.
The first neb treatment we tried while Gavin was awake. That did not work out well. For the first minute or so he just stared at me with these huge scared eyes, it broke my heart. Then he screamed the remaining time. Today, we tried it while he was sleeping and that worked much better. When I first held it up to his face his opened his eyes a bit and we were worried that he would wake up, but he fell right back asleep for the entire treatment. That was much easier for both Gavin and myself. He still does really well while we give him his CPTs. The only time he gets frustrated is when he cannot see anything while we do the treatments on his side and he faces the couch cushion. We've tried putting colorful objects in front of him, but he is only happy when he can see all around the room at his leisure (or just "his pictures" ha)
We try to remind ourselves that our doctors/nurses goal is for Gavin to live a full lifespan, but that is difficult to remember in the day-to-day moments.
Casey is still on the job hunt but has had several interviews. We are just crossing our fingers that one of these works out AND that they have awesome insurance :)
Keep praying for us!