A great weekend ended with a bad night

This weekend was so great and it's so wonderful to see K with his spirits so high. When I posted my last blog things kind of made a turn (temporarily) that night. He had fallen asleep for the night after being up all day long with no naps. The doctor wanted to get some lab work done to check his blood levels (bare with me, I don't know all the correct words/terms) and thought they would change out his IV while they were at it. They woke him up around 11 pm, got him settled in a wheel chair and brought him to a different room. She proceeded to start an IV in his left arm. Once she got the needle in she poked and poked around to find the vein while Kainen sat there crying. She took it out, gave him a few minutes to calm down and then tried again doing the same thing and eventually giving up. They brought someone in to draw blood and he tried in that SAME ARM!!! Couldn't get to the vein so he tried in his right hand and was finally successful. Stupid. Poor Kainen was crying and screaming and I couldn't do a thing about it.

We got settled in his bed again and the nurse came back and said his blood count was low, at 14...whatever...which is critical so we HAD to get the IV in as well as more blood to double check. We got him back in the wheel chair to go to the room and they looked at every possible vein eventually deciding on the right hand. They brought in an anesthesiologist to do it since he was better at getting into smaller veins, I guess. He didn't get any further than getting the needle out and Kainen screamed and pulled his hand away not giving it back. Understandably after their first try. The decided to get reinforcement aka a big muscle dude and one other person to hold him down! The hardest thing I've ever had to do. Ever. Having him look at me screaming MOMMY! broke my heart. Nothing I could do about it. He finally gave in and stopped fighting saying FINE but still crying.

We got back to our room, he fell asleep, I broke down crying, talked through it with Dave at 1 in the morning and then she came in and said he needed a blood transfusion. Cried more and they came in to start. She said it would take 4 hours. The first 15 minutes she had to constantly do vitals and ask him if he was itchy, hot, if his back hurt or if he felt nauseous. Then every half hour she had to take his vitals. I was worried about him so I stayed up until about 3:30 and then I just couldn't stay awake. I got about an hour and a half of sleep. Kainen was dreaming all night, crying, saying he didn't want to do this anymore. Poor thing. At 6:30 they got him on a stretcher to go in for his third "surgery"...cleaning his foot and changing the vacuum. It went pretty quick. The longest part is recovery. He has to wake up and be stable of course but there's a lot of waiting around for discharge and people approving things and calling upstairs to give the report to the nurse, blah blah. So we didn't get settled in bed again until 11 I think. Kainen woke up and was perky right away like nothing happened which makes it easy for me to bounce back too.

Here's some pictures my Dad took during some visits...

...a rainbow above the emergency room while we were on our way to Harborview.


I just love him so much...he's been such a trooper. I'm so proud of him.
In the emergency room at Harborview.


A visit from little brother Miles (thanks Dad for bringing him). Kainen was still pretty quiet and not really up for visitors and Miles wasn't really sure what to think about it all but it was really nice to see him.





Kainen had a great day today! He's been smiling all day. Giggling. Playing. A volunteer for the hospital came to entertain. She brought play dough and we made movies with the dough...moving it between a series of still pictures. Kainen wants to dry the creations that were made.


He wanted to go to the play room again and we made it work.


Then we stopped by the sky bridge to check out the view of Seattle.


Great news!!! I just asked Kainen to try and wiggle his toes and two of his toes moved!!!

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Location:Harborview Medical Center