Against my own better judgment we went back in last night for another shot at the sleep study. We made it threw the night but it went pretty much the same as last time. Kai woke every half hour or so screaming! It was torturous, miserable and I spend the whole night thinking how I… Continue reading Sleep Study round 2 & chemo week 6
It is SOOOOOO nice to be home!!!! I was so disappointed that it has been raining since we got out of the hospital this week but today I ended up really enjoying the gray day at home. Kai and I had a morning doctors appointment, visited with family and had lots of snuggle time. He… Continue reading Rainy summer day AT HOME!
They keep telling us the risk of infection after gtube placement is low, even for chemo kids, yet here we are spending another weekend with our favorite hospital buddies Meg & Addie, both kids with infected gtubes! Seriously!?!? We did get out for about 24 hours Wednesday night after surgery. When we got out we… Continue reading Infection
Thankfully today was much better than yesterday. We are still keeping ontop of Kais pain meds, but he has required less and less as the day went on. He is still resting compfortably and the nurses are teaching me about his new gtube in anticipation for us going home tomorrow…we will see We are still… Continue reading A better day
update: For now Kai has all the blood he will need. If he ends up needing regular transfusions in the future we will be setting up scheduled clinic days for people to come and direct donate. I will personally have to add you to the list for the hospital so please contact me directly if… Continue reading Blood donations needed
Wow what a horrible night here at childrens. Kais surgery went well. It was quick and seemingly simple just as they told me it should be. What they did not tell me is how horrible the recovery would be. He keeps waking up screaming every few hours. He is in so much pain it is… Continue reading Gtube surgery
I was afraid that once we came to the sleep study Kai would ‘sleep like a baby’ but no worries, he did not disapoint. He hated being hooked up to all the wires, kicked and screamed the whole time. Once the set up was done it took a while for me to get him to… Continue reading Sleep study
We are still here at Childrens, getting chemo tonight, trying to figure out the feeding tube and talking to the sleep specialists. They are doing some GI testing tomorrow in preparation for his permanent feeding tube and then we can go home! I really hate watching him get chemo. As soon as they start giving… Continue reading Chemo week 4
And again we are back inpatient at Childrens. Kai has still not been feeling well and continues to loose weight. He still has some inflammation in his ventricles but this MRI did look better. We have been avoiding the feeding tube for a while now. Each week i work so hard trying to feed him… Continue reading Feeding Tube
After only two weeks of chemo Kai was readmitted back into Childrens hospital. He was still having his usual symptoms of fussiness, poor appetite and restlessness, all things that could now be blamed on chemo bu i still felt like something else was going on. Kai blood eork also came back that he was… Continue reading Chemo, complications and A few new friends!
Keikikai 