MRI never happened yesterday. He fasted all day for nothing.
After we knew MRI wasn’t going to happen I was able to feed him some and he actually ate pretty well. He had some Mac & cheese and chocolate pudding with peanut butter ( his new favorite way to eat his PB!) He probably ate 4 ounces of food all together which is pretty good for him lately.
After he was given a chance to eat by mouth they hooked him back up to IV fluids and his feeding tube to get him everything he needs.
By this point he was starting to fuss again and it was obvious he wasn’t feeling well. He ended up getting more pain meds to try and keep him comfortable and I laid down with him for a bit. After a few minutes I noticed his shirt had a wet spot on the front. I lifted it up to see what was wrong and I saw a big swollen bump on the left side of his chest where is port is. Apparently his port access got pulled out a little and the fluid was being pumped into his tissue rather than his vein. It swelled up like a little boob and was pretty sore to the touch. The nurse had to come in and redo his port access. Kai did well with it, barely making a peep despite the fact that we had no time to wait for the emla ( numbing cream). Within tan hour the fluid dissipated and the bump was gone.
After that was all situated we were looking forward to a restful uneventful night, but Kai was still
pretty miserable.
An hour or so later he seemed to be settling down a bit when all of a sudden projectile vomiting everywhere. Luckily the nurse was in the room and sat him up quick. We are now just hoping nothing got into his lungs. So far he sounds good.
Today has been more of the same so far. NPO again, waiting for MRI. His team keeps coming by to check on him but no one really has anything different to say, except that we will be here through the weekend.
Until he is eating and pooping regularly we’r not going anywhere. Until the MRI he can’t eat. Without eating he’s obviously not going to poop. And so we are stuck.
Everyone is doing their best to keep him comfortable, which at this point consists of round the clock oxycodone wi a few doses of Ativan sprinkled in here and there.
Thanks for everyone’s continued thoughts and prayers. I will keep you updated on the MRI results when I get them, although I am not expecting to get any big answers from the scan anyway.
Thinking of you both and sending hugs and good thoughts.
Love you Kerri and Kai!
Last post was me?
Kerri.
I posted a message to you, but I don’t see it. I must be doing something wrong. Any way, sending you lots of love and you are constantly in our thoughts and always in our hearts. Is there anything you need,- clothes, etc?
❤ thanks for keeping us posted. we've been thinking about you guys around the clock. sending lots of love and light!
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Omg Chris I LOVe your profile pic. Seeing that face made my day! ‘Kai Kai. Kai Kai’ I keep hearing T say that. So cute!