Kai had been doing well for a few days. I have been able to back off of some of his pain meds (oxycodone) and eventually started pooping on his own (without the use of a suppository)! He has been tolerating a bit of food each day and has been awake and alert most of the… Continue reading A little fun
We had a follow up appointment at Dana Farber last week. The plan was to clarify our end of life wishes for Kai, DNR, autopsy, etc. Its kind of crazy to think you have an appointment for these things, but we did and I was dreading it. My regular chemo night insomnia has turned into… Continue reading And the confusion sets in
There has been this leuming finality to every day since taking Kai off chemo. Like with every day that passes and every decision I make I am loosing something close to me. Loosing a part of me. His life is in my hands and mine in his, and it is a scary place to be.… Continue reading Worth the Trip
****This post was written last week a few days after starting Kai’s new pain meds. It was a ruff week and he was sleeping a lot and barely eating which all made us feel the end was near. It was a long hard week and I guess I forgot to post this writing so I… Continue reading Sleep -last week
Yesterday was Kai’s official birthday. My little baby boy is 2! It’s hard to believe he has only been in my life for two years. I can hardly remember life before him and I just can’t imagine my life without him. All week I have been thinking back to the day of Kai’s birth, and… Continue reading Turning 2, a look back
I know you all ave been waiting for an update on Kai. The truth is he is not doing well. After leaving the hospital last week he has had a pretty ruff time. We were only out one day but it felt like forever because he was so miserable. I was so worried about him,… Continue reading Post hospital update
Kai was up half the night again and hasn’t been feeling great this morning but we are still on schedule to go home! Last night I got my teaching on how to use the IV pump at home but a visiting nurse will also be there with us tonight to make sure all goes well.… Continue reading Day 6 -going home
Kai had another good night. He was awake a lot but he was pretty content. He did not have any pain meds and he tolerated the feeds and his chemo well. This morning the team came by and said the plan is to get us out of here tomorrow! We will continue to bump up… Continue reading Morning Rounds
(sunday) Kai had a decent day yesterday. He spent the afternoon with his Gigi and he was feeling pretty good. He had a long stretch from 2pm-3am with no pain meds. He tolerated his tube feed all day and all night and everyone was hopeful that we were heading in the right direction. The on… Continue reading Day 4 inpatient
Kai went into MRI yesterday around 3:30 everyone was excited that we were getting in ‘early’ since our slot wasn’t until 5:30. They must have forgotten that we also waited all day yesterday…thing seems to move a lot faster down there on a friday…just saying Anyway they got us in early. He did ok. Because… Continue reading MRI ‘stable’
Keikikai 