It's been a rough night and a ways to go. Thanks for the prayers. Lucca's mom is getting insights we all need to concider.
"I have to retitle these entries because I can't keep the days straight. So maybe this way I can keep things together because they write the date on a dry erase board in our room, so that should help. You know how they say before you die your life flashes before your eyes? well that kind of happens too when your child is in a life threatening situation. The difference is their life flashes before you and you think about all the things you should have done better. Like not being so concerned about your house being cleaned and instead you should have played with them more. Or how selfish it was that you complained that your hips and body hurt from holding them all night because they were sick because now you would sit forever just holding them. Or wishing they would just go to sleep because you are so tired and now it doesnt matter, you would give anything for that time back. And then you think that it can't end now because there hasn't been enough time for them or for you together. Or for life. And then everything gets slow like in the movies and on TV like it's not really happening. We had a really difficult night and day with Lucca. Everything that I had been worried about yesterday intensified today. Her heart rate was higher and wouldn't settle down, her blood pressure started to get really low, her fevers stayed high and would not break, and she was shaking and moaning. I started to notice her belly looking distended and hard. Verlin noticed her feet looking blue and purple. By 2 pm the doctors started to become concerned as well. Before I knew it we were in the ICU. They had about 10 people drawing blood, starting antibiotics, checking pulses, charting, you name name it. There as a swarm. They gave her a few boluses of fluid, more blood, and more platelets. She had X-Rays and an ultrasound. The good news is no fluid in her lungs or VOD ( the liver clotting that can be a side effect). The bad news is she definitely has an infection. So now she is stable. She still has high fevers, mucacitis, an elevated heart rate, and shakes from time to time. She also has a distended belly they believe is due to the mucacitis and the bowel being swollen. The intestine lining is most likely coming off which is swelling her belly and bowel. This should regress in a few days or so once her neutrophils ( white blood cells) start to return. Her blood pressure is stable. She is on two different medications to help regulate it for now. She needs to be monitored closely for awhile. The concern is the infection. There isn't much you can do. She is on a number of antibiotics and we just have to hope that is enough to support her till her counts return. The soonest we would see any nuetraphils would be the beginning of next week. So this is a really crucial time for her and a scarey time for us. For awhile today I wasn't sure what would happen. I didn't know if she was going to be ok. I'm still not sure. And I feel like if she isn't ok will I have done enough for her? Will I have spent enough time enjoying her? Will I remember her giggle and her voice? I'm scared its not going to work out like I want it too and I will be left empty wishing I had done more."
Topic: Lucca will start her Stem cell transplant & it could kill her (Read 18373 times)
