Crisis averted but then Monday he started getting fussy again and by Tuesday he was a screaming disaster :( It didn't have to do with his breathing though - now it was related to feedings, at least at first; eventually it got to the point where he was inconsolable off and on all through the day with "stress rash" as bad as after a surgery. We took him to the dr and he wanted him admitted for some tests or at least a break from feeds for IV fluids, etc. He thought since Mason was drawing up his legs and very tender in abdominal area that he needed to rule out things like stones (gallbladder/kidney), pancreatitis, etc. He already had his appendix out so that we weren't worried about. But he'd had 3 seizures that week too, and stopped an antibiotic so there was the possibility of infection as well. The docs were able to draw some labs but couldn't get an IV going even under ultrasound guidance so they tried slow drips for feeds (just as miserable) and took an xray, ultrasound and got neuro consult in case all the GI stuff was seizure related (that can happen).
Blood work they proclaimed "normal" (but in reality it showed elevated sed rate, a marker for inflammation--we hope this was just from the previous pneumonia, and elevated AST/SGOT liver enzymes (which can be elevated from gallbladder disease, liver disease, heart damage, other muscle damage, infectious abscesses, etc.-we hope this was just due to seizures earlier in the week which can affect his muscles). No one could deny he appeared to be in awful misery and pain but everyone was at a loss as to how to help. He had another seizure Thursday morning. The imaging was so obscured by gas/stool that they could not see the other organs well enough for ruling out the issues they were concerned about. Basically all they could tell us was to give him a laxative and increase gas meds and other "comfort measures" because the amount of gas he has is "impressive" and must be excruciatingly painful (he cannot burp due to his fundo, and fights us when we try to vent his tummy. If he is producing gas that's trapped in the intestines it doesn't really do much good to open his tube. We also were told to increase his Keppra for the seizures (which we are doing veerrry slow as opposed to the all in one day increase they had us do last time which resulted in new and worse seizures). If he still doesn't get better they offered a gallbladder med to keep bile out of his GI tract in case he has bile reflux. Once he gets his seizures under control they might want to do a scope test to rule out ulcers, etc. But if gas is the main problem we are not eager to pump him full of more gas to sedate him :(
We came home Friday night and worked our way up to full feeds again which is where we are now. He is tolerating them somewhat better but now is back to where we were before the pneumonia....green slime coming out of his eyes, a cough and more junky throat - we are guessing another sinus infection which seem to hit with the Keppra increases :( The immunologist is increasing dose of IgG but is baffled (as are we) how he keeps getting all these infections despite having a much higher level of IgG in his system (before infusions, he was 150 or less - now he is over 1000 and still sick one after another). Something may be wrong not just with the number of antibodies (which tag germs for destruction) but actually mobilizing his T cells to kill the germs.
So...we are worn out but trying to lean hard on Him to carry us through and give us wisdom/direction/guidance to keep our guy feeling good and making progress.
In other news, his genetics team sent his medical file today to the NIH's "Undiagnosed Diseases Program" in Bethesda, MD so please pray that God's will would be done in whether or not he is selected to participate, whether they can find some answers on what is going on and that can be acted on for treatment, etc.
The title of this post was regarding a great challenge Sunday by our pastor in his sermon after a hard week ... he wanted to know how many of us who say we trust God can actually be trusted with His name - in other words if I claim to be His and that I'm trusting in Him, do I also live in a way that brings Him glory or am I an embarrassment to Him when I fail to really act on the trust I say I have in Him, or when I live in a way that dishonors Him (believe me this happens a lot when I let myself get too down or frustrated/exhausted). As Pastor Steve said, the problem with the church is not it's Head...so please pray for me in particular that I would by His strength be able to live out this verse:
"...that you may live a life worthy of the Lord
and may please him in every way: bearing fruit in every good work,
growing in the knowledge of God..." Col. 1:10
