She's been sick in between then and now. I have learned many things along the way and my care for her has changed, a lot. I try to fuel her with good supplements to build her immunity. Even when she does get sick, she's been able to fight it on her own, just doing homeopathic remedies. Even fought off the flu a month ago, she went through the aches and chills got rid of it in 3 days. I've been working very hard, helping her stay strong.
This time around I tried it all but this sickness got the best of her, she was fighting something her little body was not able to handle. After a couple days of being able to control the fever with baths, home remedies. I finally started treating the fever when I couldn't keep it down naturally, Tylenol helped drop the fever from 103-104. Finally took her to the Dr. and we started treating her as she had pneumonia. Really we didn't do X-rays, or hear fluid in the lungs; just due to the symptoms. I still waited til that night to hold off on antibiotics, but my gut-fear got the best of me and started her on them Monday night. Definitely didn't want to risk the chance.
Last night, she finally asked for food, had some bone broth, and her teta (bottle). She's now sitting unattended and talking to us more. Took a toll on her little body. I'm just happy we finally got some fluids in her.
Still dependent on O2. Which is expected with all her respiratory issues.
Luckily I had our day nurse yesterday and got somethings done around the house and my night nurse was able to work longer and got caught up on my ZzZz's. I'm hopeful for a better day, she's such a strong baby.
I've had many people tell me she's beating the odds when it comes to what is expected from I-CELL children. She is very mobile, verbal, etc. To be honest, I feel like there's a large spectrum within I-CELL kids. It may have to do with their mutation, the progression etc. who knows? Just because Bri is hitting milestones we never imagined she'd achieve... doesn't guarantee us anything.
I simple cold can defeat her.
Time is not promised. We know the "life expectancy" those numbers don't lie. The majority of I-CELL kids don't make it pass their 5th birthday. Yes, there are a few that have, but overall, it is rare. I've actually taken count myself, from all the kiddos I know of that have passed. Some don't even make it past their 2nd.
I've tried my best to keep these situations as peaceful as possible at home. (I know these situations can go from great to zero in no time.) I don't want any panic or stress. I know it's a very hard situation on us all. It takes a huge toll on my girls to see their sister sick, or hear the machines going off. They have many questions. This can be very traumatizing for them, I am doing my best to be honest with them, peaceful and hopeful.
I know Bri will get through this one. It is not her time, not now. But, I can see how this disease is damaging her, her airways are narrowing, her respiratory issues are getting worse. It doesn't matter how well I care for her, how strong she is, we won't be able to defeat I-CELL. Not in her life time.
