Reinventing the Wheel...

Today we planned to drive to Indy for Nicolas' 2 scheduled Riley visits...but Nicolas had other plans...instead we drove down Sunday night...checked into the ER and was admitted to the hospital around 3:30 a.m.  Yesterday, when we would burp Nicolas through his g-tube, he was pushing back incredible amounts of fluids...Typically when we burp him, we hear air come out and see some fluid (which would be the equivalent of spit up)...But by 7 p.m. he "burped" back 14 ounces of bright yellow fluid when his stomach should have been empty and ready for a feed.  We called Riley and they suggested we go to the ER...So here we are!  Last night they started an IV (successful after 6 tries), ran blood work, took a urine sample, and did x-rays...We have found out that there is no blockage (great news) but his white blood cell count is pretty high and he had a fever of 104...so he is obviously fighting something...but we don't know what yet...the blood and urine cultures have not come back yet...we'll know the results in 48 hours.  During the x-rays we did see a clear picture of his spine and it is evident that scoliosis is setting in...that has drawn the attention of Riley's Physical Therapist and Occupational Therapist...together they are planning to fit him for a wheel chair during our stay!  Today was a big day!  Our doctors are rallying their troops and once again working together for a common goal...How do we make Nicolas more comfortable!?!  We found out that what we thought were seizures do in fact LOOK like seizures (Doctors even thought so) but the EEG has proved that they are NOT!  Apparently the Video EEG was particularly difficult for the Neurologist to read!  So all of our doctors are working on figuring out what is causing the coughing, extra secretions, tongue biting, etc.  We are possibly changing his formula, meds, running more tests...discussing many options that will help Nicolas be more comfortable while possibly avoiding a trach...So here we are...reinventing the wheel!  The doctors feel that we will be here for the next 4 to 5 days.  We are very hopeful and excited about the attention he is getting...our doctors seem focused and determined!  Please pray for them!

Jake is here with me but will probably go home tomorrow.  We are in a shared room...which seems small and crowded but our roommate seems very nice.  Her beautiful 14-day old daughter is being checked for reflux and monitored for apnea issues...I'm sure they would appreciate your prayers as well!

Right now Nicolas is sleeping very peacefully in a cool blue Tumble-form chair...It is a positional chair we are trying out...if we like it we'll probably get one for home.  Here is a picture!  I'll try to update you as much as possible!

Have a great week!

Much Love,

Felisa