Grace has in the ICU tonight. I was with her today during her monthly infusion that she practically slept through. Her abdomen has been a bit distended but that was attributed to some gas that we have been able to mitigate through venting of her G-tube and with gas drops but today it just seemed like it was getting larger but I kept telling myself no it’s just the really uncomfortable hospital bed/recliner I had her positioned in during her infusion. When we got ready to go home I was buckling her into her specialized harness in the van and the preset strap no longer fit like it did just five hours earlier and I had to extend it two inches to fit.
Before leaving the parking ramp I called Grace’s pediatrician and he advised we go straight to the ER as we would need an X-ray. So we got out of the van and made the trek to the ER. While we were triaged immediately no one knew what a Mitrofanoff was which makes me seriously consider how fast I could drive Grace to her doctors in Minnesota. At first, we were not getting the needed momentum due to significant delays in radiology but once the results came back and due to calls we made to our surgeon’s office in the Minneapolis things were quickly set into motion.
It’s not a big secret that we are often leery about the capabilities of local medical care which have been in part to providers transferring care out as Grace is so complex, the complete lack of subspecialty in the area or even the entire state (in some aspects we just don’t have the population needed to recruit the subspecialties), and often times unwillingness to work as part of the overall team with Joy and I as captains of the ship (after all we are the only two people in the world that fully understand Grace’s complexities and interworkings). We were pleased that the pediatric surgeon that was called in was more than willing to work with us and with our doctors in Minnesota.
Based on the local surgeon’s consultation with our surgeon’s office Grace was admitted to the ICU, not because of sickness but due to her complexity. Second, they began pumping her full of IV fluids which we were able to see some immediate impact, third, they started an NG-tube (a tube through the nose to the stomach) to pump out excess gas. The radiology tests showed occlusions in her bowels a risk of this type of surgery. This is the third surgery she has had in her abdomen over the last 10 years and with each surgery the greater the chances of complication. An occlusion is an obstruction in her bowels that is can be caused by any change to them.
The plan right now is to limit all volume by mouth and move everything to IV, she will be in for at least 24 to 48 hours and hopefully, we’ll be able to avoid surgical intervention.
As we waited in the ER Gene Autry singing Back in the Saddle Again played over and over in my head. We pretty much have saddle soars now I would just as soon not to be riding but here we go again.
This would be a really good time for anyone to pray or think good thoughts…you decide which. The next 24 hours will be crucial.