Light of our Life: magical fluids on ice

Wednesday, December 8, 2010

magical fluids on ice

Since arriving late Monday night, Sam has been on IV fluids with no tummy feeds as he had not been tolerating those at home and it had been pushing him into major respiatory and cardiac distress. There could be any one of a bunch of varying opinions of our doctors who all seem to have beducated in the carribean or some other medical university I have never heard of before..not that they are not determined and compassionate..they really are but Sam may just be a little complex for tthem here. So here are some theories:
1. He could just have a virus they have not found in bloodwork with multisystem involvement.
2. He could have had another "crash" of sorts which would indicate a metabolic breakdown like that of mitochondrial disease.
3 He could have had some GI block or issues that are causing tummy to press on diaphragm and stress autonomic nerves which then slow down his heart.
4. He could have some transitionary weakness of all systems..
The bulbar, stomach and intestinal muscles from some neuro or myopathy origin.

One big thing that happened yesterday was hearing news from the Dr here that they madecontact with Dr.S and found out that another test result from atlanta came back with concerning results of. Some nature..unknown to docs here or myself. Certain acids were at bad levels or something and so they have requested that urine and plasma be collected here and overnighted on ice to a lab in. Colorado where some of his stuff has been being analyzed..nervous nervous..whatever glutamate alpha whatever is off..will that lead to answers? Praying..Dr. S also told my. Dr. Here that we may not have answers from biopsy in the 6 to 8 week time frame..it may take more like 12 weeks..ugh!

I hate to make light of a scary situation but I keep thinking of that song for a checkers burger commercial .."You gotta eat..no matter who you think you are..you won't get far..you gotta eat"..so the mission for today is EAT Little Guy..Let food in your tumm tumm!

HUGE AMOUNT of Prayer going out to my friend Robin today..and it is her bday too.

1 comment:

ClarissaDecember 8, 2010 at 12:55 PM
praying!
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Samuel's Health Challenges

Probable Mitochondrial Disease with Complex 1 and 3 Defects in the OxPhos respiratory chain
Major risk for metabolic decline and acidosis with physiologic and sensory stress.
Frequent Bradycardia (low HR) episodes that have proceeded cyanosis/ low oxygen desaturations and required life saving resuscitations and stimulation. Now happening less frequently with stress avoidance.
Exercise intolerance, endurance concerns and muscular weakness.
Significant GI pareisis and decreased motility causing frequent pain and feeding concerns. Much improved recently with addition of gastric neuro-stimulator device implanted in abdomen.
Fiber 1 and 2 atrophy shown with muscle biopsy.
G Tube fed but now also taking in some nutrition by mouth.
Pyridoxal 5 Phosphate (co-enzyme of B6) dificiency
Nissen/ fundoplication created to ensure no reflux or aspiration of stomach contents into lungs.
Autonomic Dysfunction / Vaso vagal instability which is apparent on multiple levels. From temperature intolerance to circulatory irregularities and his Brady events, all related to nervous system malfunctioning.
Transitionary Air Hunger/ Respiratory Distress
Oromotor Dysfunction
Hypotonia of the trunk area.. now far less obvious than as a baby.
Diffused Encephalopathy at birth but now EEGs indicate typical brain waves.. may be transitional with stress.
Tracheomalacia - airway collapses
PFO (small hole) with right to left shunting that never closed on his heart at birth.
Seizures - well controlled by medication
Developmental, Fine and Gross Motor as well as speech delays, missing most of his milestones but currently and rapidly making strides.