Good morning gang! Its been awhile since weve updated. Between Donovans new school schedule, numerous changes at both of our jobs and Dommie we are going non stop until 10pm each night and by then, were too exhausted to do much of anything. We finally heard back from Hopkins. They too dont know the specific cause of Doms distention. Their GI and neurosurgery teams feel the best path is to externalize his shunt and at least eliminate the possibility of CSF and troubleshoot from there. Externalizing the shunt has always been up in the air but as a last resort. I spoke with Dr. Keating at CNMC and instead of hospitalizing Dom for a long time hed like to try and reroute the shunt to his heart. The thing is, internally Dom is complex and that may not even be an option. Secondly we are petrified of what the added stress will do to his heart if possible. Dom never makes things easy. We are waiting on confirmation for an ultrasound for Monday. We all agree we need to move quickly. Doms belly is getting progressively worse. The girth continues grow albeit slower than what we saw last month and August. He is vomiting daily and now is constipated. Weve tried suppositories, increasing his water intake, altering his feeds to continuous and no real change. Cognitively hes doing well. He changed hands with his toy the other day! Hes also swinging his toys to bash his mobile like hes playing baseball. He must have Os and Nats fever. Still smiling but hes so uncomfortable. It took our nursing agency close to 2 months but we finally got a daytime nurse for Saturdays and every other Sunday. Even with the help we are just as exhausted. Its like the universe told our employers they have help now...throw everything at them. Its been a tough few weeks. I see it in my wifes eyes...shes tired. Not sleepy....tired. So are Donovan and Dommie. And I cant do anything to fix it. House is a mess. Yard looks horrible. Donovan barely gets any attention. And weve got a neighbor and/or their kids keying our vehicles for 3 months. But we dont have the time or energy and its a matter of priority. The light at the end of tunnel is a little dimmer. Actually I dont even see it anymore. Too busy to look for it. We pray all is well with you and yours. God bless and thank you for walking with us. Weve got to go relieve the nurse, get Donovan ready for school, get ourselves ready for work, keep an eye on Dom til his day nurse shows up in a couple hours, take out the trash out and go sit in traffic for awhile. Happy Friday gang! -Dad-
Posted on: Fri, 03 Oct 2014 09:41:03 +0000
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