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.