Monday night was better. Danielle got some decent sleep. They ended up putting a feeding tube in her nose (ng) and running continuous feeds over night.
The night started off a bit hairy as I tried to feed her a bottle and she was clenching really bad. I could not even get anything in her mouth. Neurosurgery came up to reprogram her shunts from her MRI and I mentioned it to the Resident. I was really worried that something happened when she self extubated her vent tube. He suggested the picu team contact the anesthesia to see if anything mechanically happened. That never happened and I was frustrated. That night they started the feeds thru her ng. Continuous feeds all night an ounce and a half every hour. That Was a lot to start yet they wanted her to have a calorie burst.
Tuesday morning her neurosurgeon came in and gave me the results of her mri. He w as happy with what he saw. The 4th ventricle looked better. There is still a little fluid there that will drain over time. I had asked him if there was anything I should be watching for with her..his response, 'no, she is a new girl now she will show us who she is we have no expectations of her.' That was just what I needed to hear this morning I finally got my smile. I needed to see that in the worst way and upon singing the good morning song to her, well this is what I got in return :-)
The doc cleared us to go to the peds floor and I felt ok about that. She did tho have to have quite a bit more oxygen the night before and I was thinking she needed another breathing treatment. Who knew it would take begging for that to happen. Well she had pretty high sodium levels and this can also cause wet lung the doc said. So upon bringing this to her attention a chest xray and breathing treatment were ordered thankfully because she really needed it!
Later on that afternoon we moved to the peds floor. Strangely enough we are right next door to the room we were in 3 weeks ago! Danielle was happy to go for a little ride!
We got settled last night and her care is from the General Peds team now and Neurosurgery second. we have the same resident as a few weeks ago which is nice. Well we got settled and i tried to feed her and it didn't work. They had given so much thru her ng for the previous night that she was not hungry. She got tucked in bed and the throwing up began. She threw up 4 times in a matter of 2 hours. And lots of mucous. So this meant of course changing everything AND her collar! That was the worst and she dis not like it it was a rough night trying to get her comfortable and resting. About 4am i held her until this morning. Her oxygen levels also had to be turned up to 3 liters over night. Poor thing, another rough night for both of us.
This mornings labs showed her sodium high again and creatnine also. They asked me to bottle feed her today as much as possible. She did great. She turned around today. Happy and lots of smiles chattering at me and she ate her bottles and spoon feeds as well. Her one iv went bad so they took it out.then her other iv went bad and they took it out they weaned her oxygen down and she did so good that it is off and tonight her monitors are off too.
We had a little visitor today from a furry friend! Loody the therapy dog was visiting kids today and he came in and sat on my lap with Danielle for about 15 minutes while a team doing a Documentary took lots of pictures. It was so incredibly sweet and she was so happy. I even shed a few tears....such a sap i am!
Tonight we are still here but we think so close to going home this mommy can taste I
it! She's extra feisty today and moving all around her bed. Tonight well she's still awake so I think snuggling all night is on our agenda. Praying for good morning labs and whatever else they want. Home...is in the very near future..crossing our fingers!
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