Monday, March 29, 2010

I knew this would happen... Now that she is "dismissed" it is unbelievable to get in for follow up. The sleep specialist who gave her two prescriptions can't see her until May 10. As for the neurosurgeon I can't get past his brick wall of schedulers to get in at all. Why, why would they dismiss her from the hospital on... her worst day?? Making more phone calls... At some point someone will be able to put this puzzle together, right? Hoping before any long term effects happen! Grrrrrr, a very frustrating day. {Candi}

Surgery is NOT scheduled for Wednesday because they don't think the Pineal Cyst is what is causing all of her Ataxia(lack of coordination) after her 3rd MRI. They think that her sleepiness is caused by RLS(Restless Leg Syndrome) and her not going into REM sleep, which is causing by her low levels of Ferritin. So they put her on Clonazepam .... See More1mg/mL to help her go into REM sleep better and Ferrous Sulfate 220 mg/5 mL(Over the counter) iron supplement. Basically, they don't know what is causing her Ataxia so they discharged us and are telling us to wait 2-3 weeks to see if we can get her sleeping "fixed", which wasn't "broke" until we started staying in the hospital. 2-3 weeks ago she was perfectly healthy but she has gotten increasingly worse everyday and we don't think that she can wait 2-3 weeks. If she keeps getting worse she may not be walking or talking at all in 2-3 weeks. It just feels like the Mayo Clinic has given up on us because they don't know. Anyone who has visited her knows how she is acting and it isn't good. {Ryan}

NOBODY TELLS ME NO!!! After hours, literally hours and countless phone calls I somehow got Reese an appointment with the neurologist that they originally said I couldn't seen until May 10th. She will be seeing him at 1:30 tomorrow. I will let you all know what he says and if they readmit her or what. {Candi}

Even though today started out bad...things are looking up! With Reese's appointment tomorrow at 1:30...please keep praying for this family to receive some answers. Also pray for the doctors to have God help them to find what they need to do so Reese can get better and go home! - Kim

1 friends had to say...:

Jodi Lansink said...

I feel so bad that they are "giving up"----but I know you guys WON'T give up!!! You will do what you need to get your little girl well again, but in the meantime, this all just sucks! Stay strong and keep your chins up and keep pushing forward, and good for you Candi for not taking NO for an answer! Love the picture at Olive Garden-----cute! :)