Elle's nurse was here taking care of Elle and Paul and I were off to the hospital to spend the day with Kaden. After a Starbucks run and and a discovery that we had forgot to pay the van insurance we finally made it there!!! He had just fallen asleep when we arrived but woke up shortly after. He was up from 3am till 1pm today....he slept so much this week that I think he is abit confused and hope that he doesn't get off track cause he was doing so well. Anyways, we played all afternoon. He had smiles for his mommy again today but those eyes of his are still looking like he is on way too much Phenobarbital. They have held his doses and are doing another blood level at 9pm tonight and if all is well they will resume his regular dose....oh will this madness ever end??
Elle was up today at 5am and didn't go back to sleep till 7am only to wake up again at 9am!!! She felt abit warm when I fed her so we gave her some Tylenol in hopes that she was not getting sick. So far today she has been fine and has played all day and has finally fallen asleep for a little nap.
Well my mom and I went to the hospital tonight and thought we would be home around 10ish as usual....NOT!! For some reason someone threw out Kadens formula and he was left with none for the rest of the evening and morning.....not good. His Ketogenic Diet has a special formula that is not bought in the stores. So, amazingly enough we had picked up our order at Deer Lodge so we had it at home. I had to get Paul to check the special scale and then pack up the formula and dad had to drive over, pick it up, then drive to the hospital to drop it off to us. Then, a couple of the nurses, and a resident had to somehow figure out how much powder and water to mix to try and get the right ratio.......at that hour there are no dietitians, kitchen staff.....nobody.....anyways they managed to come up with something and he got feed an hour later. His Pheonbarbital blood level was 40 so he was able to get his evening dose and they will check it in the morning.
No comments:
Post a Comment