We got to the hospital at a good time. I decided to give him his bath since I never really do that. I always visit during the day, so I pretty much always miss that. I also figured Kenli would enjoy helping. Well, of course she was a bit too much help and I was regretting my decision to let her help half way thru...lol....she was determined to do things "by myself!!" ugh, four going on fourteen!! Lord, help me!! :) After she helped bathe him, I let her hold him and they laid in the recliner for about 40 mins just watching Mickey Mouse on my phone. She was glued to it and he just simply watched HER for 40 mins. It was so sweet. He stared at her and was just so interested in her. Every so often she would look at him and give him a little kiss. ;-) melted my heart! She is such a great big sister.
As for an update on his condition: The GI doc came in on Friday around 6 and took a look at him. It's a really long story what he said, but this is the cliff notes:
- He thinks the liver damage may not be related to TPN totally, because when Kade was off of it last week, his liver got worse....a good bit worse, so he recommended that we do a liver ultrasound (doing tomorrow morning)
- He said due to the above, Kade could have several different conditions that I don't remember the names of. One is common in downs and he can grow out of, one is something to do with gallstones and hurting the liver because the bile ducts are inflames, and one he said "if Kade has this, he would truly be the unluckies kid in the world". Not sure what it was called, but whatever he was talking about would require a liver transplant and that doesn't definitely cure the problem....bad news...you get the point....ugh
- He started him on cereal three times a day along with a little baby food bananas. Kade likes the taste, but screams thru the whole thing...its hard for him to get it back with the cleft (poor kid has so many obstacles....uggggghhhhhh, can he catch a break??)
We also figured out some of the reason as to why he was being so fussy and so pitiful sounding. The nurses told the surgeon this twice but he didn't listen.... (don't get me started) but they were putting silvadene(sp?) on his g-button site because it was looking really yucky and bleeding kind of, and apparently it was causing his skin to burn bc it wasn't the right thing for the job. That is why I hate surgeons and love nurses. I don't understand how some of these people have such big egos that they won't listen to these nurses.....These nurses care for Kade 24/7. They can tell you things about him that I can't tell you. They know, like us, his particular cries, moods, etc. It just amazes me that a nurse could tell a doc/surgeon something that Kade is doing "out of the ordinary" and they just blow them off, but then come back 3 days later and do exactly what the nurse told you was the problem in the first place. Jeeze!!!
Our surgeon had surgery Tuesday on her hip. So we have to deal with her partner for the next several weeks. I can't tell you how much of a wrench that throws into this. Not than I plan on having surgery, but if Kade were to need it, I want the surgeon familiar with his insides doing it. Idon't want the other partner that hasn't...but again, out of my control. I just need to pray we won't be in surgery and be done with it.
So, Monday liver labs and ultrasound...hoping for some decrease even though he has only been off TPN for 3 days...I still can dream, right!
Video from today...not very interesting, but it's something.
Video from the other day in therapy. Trying to get him to gain muscle in neck to hold his head.
Goodnight! I am also going to add some pics later. :)
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