Day of Life #268-Back downhill

We will try to keep this brief and informative.

We could tell something was not right over the weekend. Madeline was becoming very thirsty and very upset/not like herself as well as increasing in amount/frequency of emesis (throwing up). She was trying to suck on her wet wipes and at one point even tried to drink her own bath water. Despite our concern the house dr's felt she was doing fine/did not seem dehydrated but agreed to keep an eye on her and let her have some pedialyte on Sunday. She was so thirsty that even the sight of a bottle, cup or any liquid made her scream (in thirst) and she was furiously gulping down her formula. She was sleeping all the time and as I said ..very crabby.

On monday nephrology was concerned about her state and did some blood work. Her BUN was high and her sodium had gone up over the weekend. They decided to Dilute her formula, reduce the calorie content and add polycose to her formula to add calories and reduce sodium.

On tuesday her sodium content was even higher and she was very dehydrated. Initial discussions with dr's were about how she was still puking and a suggestion was made about having her take reglin to address a stomach emptying issue. We did not feel comfortable with that option due to what we have researched and read about the effectiveness of the medication as well as the side effects that have come with it. We feel a stomach emptying study should be done to see if that is even the issue that is causing her continuous throwing up. However the sodium level and dehydration issue took first priority and a decision was made by the hospital staff to take her to the Pediatric Intensive Care unit at Cleveland Clinic.  They wanted to get her on iv fluids and monitor how her sodium levels were brought down *going down too quickly could cause swelling of the brain* after the emergency issue is addressed then we can begin to look at the throwing up issue again.


Today is Wednesday and a decision has been made to transfer her to University Hospital system. We are looking forward to getting her to a more stable state and a new plan of action.

Thank you all for your continued prayers and support we couldn't do it without you and God who makes all possible. Praise him for continuing to keep Madeline in his arms and care. We know he will take care of her /us all somehow.