I didn't get a chance to come back and wrap up yesterday, Tuesday Day 10. He had a rough day. Super fussy all day. Since he was so fussy we did his "living each day to the fullest" in his room.
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| Eli reading his book |
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| Eli playing in his bath water |
Then late last night his new Neurologist showed up. We had given up hope that he would be here as it was after 8pm. We talked quite a bit and he couldn't believe they hadn't already done testing for Mito. As he heard all of Eli's history he was like yup, duh. He ordered urine tests and lots of lab work and we will have the results in 2-3 days. Then will be the musce biopsy. He has worked with a very well known Mito doctor and seems very informed and like he knows what he is talking about. That made us very comfortable with him. He is coming back today to do a full physical exam as Eli was finally sleeping when he got here.
This morning Eli is wide awake and looking at his books. He's on his J feed now at 20ml/hr, his TPN at 25ml/hr and then his IV fluids pumping everything back in that he is losing. They just ran the 1st half of his labs and will have to do more in 12hrs since Eli is so tiny and they needed so much blood. But all will be done before the day is over.
I promise to update better today!
2 comments:
Isn't it nice to have a doctor on board that can get some where?? You won't be disappointed with Dr. E. He is awesome. If there is anything I can do for you in the midst of all this let me know. Beth
YAY! So glad that you finally found a Dr. who is not afaid to learn something new and who is already well informed. How comforting that must be! Will keep praying that Eli can stay hydrated and you & Bob can stay insane...well, if I said sane I KNOW it would never happen. ;o) Love you guys and still praying for the best!
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