We have had a few VERY fast days. Tuesday night, Kady scarred us pretty bad having 3 apnea spells within a matter of 5 hours. During the last two spells...her lips turned blue...NOT GOOD! So, Wednesday morning, I called her Pulimonoligist and they said..."Get her to Phoenix Children's Hospital ER RIGHT NOW" So...off we went. And you guessed it...they admitted her!! So I am sitting there thinking Ok seriously Kady...BAD TIMING Daddy comes into town tomorrow and I want to see him!!! NOT IN THE HOSPITAL!!! SO of course she was evaluated by every specialist that exists in the hospital haha.
She did see Peds Neurology AGAIN and they agreed they wanted to do ANOTHER EEG because there was/still is a fear that Kady suffers from mini seizures through out the day. However, good news came from Neuro and the EEG. The EEG came back with no seizure activity and the Neurologist agrees, there are no seizures at this time. BUT and there is a BUT, her EEG was NOT normal. There were some small abnormalities in her EEG. At this point, they are not concerned so they will not be doing anything but we will see Neuro again in about 3 to 4 months for another evaluation. If the abnormalities have not gone away at this point, they are going to have to dig deeper...much deeper to find out what is going on and why.
Peds GI came in as well while we were there. As you all know Kady has struggled HORRIBLY with stomach issues. GI is concerned with her weight gain, formula issues, and the fact that she is on SOOOO much medication for her acid reflux. She is on an adult does of Previcid...they have tried to back her down to a smaller dose, and she does not tolerate it at all...so as for now...LOTS of meds is our only option. However, the concern with her weight gain is pretty much gone. She is officially 11lbs and going strong. We are still having to fortify her formula for extra calories so she can catch up. We are also still having to thicken her formula with the gel based thickener so she won't aspirate the formula into her lungs while she eats and end up contracting pneumonia. BUT, on the bright side, GI is VERY pleased with her progress and is hoping by the time she is a year old, she can be off the thickener and off the medications. (Cross your fingers and say your prayers!!)
The last specialist she saw was the most important at this point...Pulminology...the apnea DR. Usually apnea is associated with prematurity...however, Kady is not considered a preemie anymore...her "adjusted age" is now 2 months...what does this mean you ask...it means Kady should not be having apnea anymore. This is very concerning, because Kady is still having them with truly no reason...NOT GOOD. This means the apnea clinic is going to be running some tests to find out why the heck this is still happening. The Docs have me preparing for the worst, but hoping for the best....The worst...something like Ceribel Paulsy (a condition that is caused by a lack of oxygen in the brain at birth with a possibility of causing mental, physical and emotional disabilities) or the best...she is just a stubborn!! (like her daddy!)
So, for now, that is all we know...and you know what...to me it is not very comforting. You know why?? Because that means we don't know anything more than we already did. I guess I need to get more paitent...as for now, I am not going to get any other answers than the ones I already have...now we get to play the waiting again. So, thats it.
As for the rest of the family, Rylee is doing fine and loving that daddy is home, I am doing great and soaking up my time with Larry while I have it. We are all set and planning our trip to Sea World!!! We leave Sunday and head to San Diego and we will spend Monday and Tuesday there and come home Wednesday. We are SOOO excited!!! More Later everyone!! Good Night!!
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