CLAYTON IS OUT OF ICU AND IN A ROOM

August 17, 1998

Hi all:

late this afternoon we were finally able to move out of the special care unit

and up to the med/sug floor. We are in room 513A. Clayton is off the oxygen

and IV fluids (he is hep locked but the IV will probably be removed tomorrow.)

Is g-tube is up and working. He tolerated 30cc (1 ounce per hour) of pedialyte

throught the tube yesterday and tonight is getting 60cc of formula (Vivonex

- as they did not have enough neocate 1+) overnight for 2 hours. Hopefully he

will tolerate it well.

Last night was horrible - he did not sleep for more than 45 minutes at a

stretch for 24 hours 3pm yesterday until 3 pm this afternoon - no matter what

he did or gave him - morphine, atarax. atavan (which at least helped calm down

his screamin) He was combatitive and inconsulable - nothing worked. IT WAS

HORRIBLE. Finally this afternoon around 3pm he passed out for about an hour

and now he is sleeping peacefuly hooked up to his pump at 9:30pm

Clayton also spiked a fever of almost 102 and we now need to keep an eye on

that. He also has not pooped yet - actually has not gone since last wednesday.

THey started to give him his lactalose tonight so hopefully that will help.

On a good note - he drank 3 ounces of formula by mouth today and actually ate

some cheerios with no problems with gagging. He also sat up with no pain and

seems to be tolerating the feeds well. We hopefully can get out of here by the

end of the week.\

We also saw the neuro today and he thinks Clayton may be having seizures

either during his screamin spells, during his staring spells ot during his

shivering spells thus he will have an EEG tomorrow/ He is also going to have

lots of blood drawn tomorrow for surgery and neuro and allergy (some RAST test

- namely for latex allergy).

Well have to run - I will post more tomorrow.

love,

sharon

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