A Light At The End of the Tunnel?

Coming back from the CT scan...all tuckered out!

A visit with the Easter Bunny last night

The dr yesterday said he does NOT think it is a sleep issue. He thinks it is an immunodeficiency caused by her H1N1 and or seasonal flu vaccines. His other thought is a stomach/intestine tumor (but he doesn't think this is likely). So the plan:

This morning... She had her CT scan ...of her chest and tummy. Tomorrow morning she will have a third Spinal Tap... This will help determine if it is the immune issue. They are going to start IVIG (a specialized blood transfusion) after the spinal tap to "fix her" if this is finally the solution. {Candi}

We have a few more updates before Wednesday is over! Ryan wrote a few more posts explaining the path the doctors are taking now.

Reese has her 2nd CT scan this morning at 9:15am provided it doesn't get pushed back by an emergency CT scan. This will help eliminate cancer in her chest and stomach as a possibility. Then tomorrow she gets her 3rd Spinal Tap to confirm what the doctor thinks is wrong. An immunodeficiency caused by her H1N1 and seasonal flu shots that she got on January 12th. If that is the cause then she will be started on IVIG infusions to boost and stability her immune system and stop her ataxia(Unsteadiness). Please keep Reese in your thoughts and prayers that this is the answer we have been looking for and that Reese starts to become herself again.

Neurosurgeon called and said it's NOT the pineal gland cyst that is causing her problems! Great news!!!! We can eliminate the brain surgery option and focus on the immunodeficiency. Spinal tap tomorrow should confirm the doctors theory.

It's amazing how great people can be in tough times like these. Truly brings a tear to my eye each and everyday I read the postive and helpful comments from everyone. My family, friends and extended family and friends on FB really help me keep my head up. Thank you everyone.

{Ryan}

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

To Reese