At this point I think the whole medical profession has gone crazy. The docs do not listen to the mom. They order ‘goofy’ tests as the mommy puts it. They diagnose something that is totally inappropriate for his condition. He needs to go home and be with his family and get back to a normal routine to be able to do what he normally does, but until he is able to eat and drink he will not be going home. And they say he has ‘forgotten’ how to crawl and how to eat. Sure. Who are these nut cases, anyway?
Before this hospital stay is over, I am afraid my daughter may kill somebody. The strain and stress on a family of a medically fragile child is unbelievable. And with the medical profession batting in the dark for diagnoses, the stress is doubled.
Continued later…
The strain and stress got worse as the hospital forced an airlift transfer (with daddy) half-way across the country, necessitating a travel trip for mom and brothers, a trip for grandpa and grandma, several more air trips for the daddy, a hotel stay and a Ronald McDonald House stay for family members, and an air trip for auntie and cousin to try to help this family through a very trying and stressful time.
From a not-too-objective perspective, this could and should have been avoided if a hospital staff had been willing to listen to the parents rather than thinking they knew what was wrong and trying to play god in the process. A child with Hirschsprung’s induced enterocolitis should not have to wait 48 hours for medical staff to determine that this was not just the ‘flu’ but rather a very life-threatening infection. A child should not have to stay in the hospital 20 days with inappropriate treatment for his condition because the medical staff cannot understand that the parents have been trained to take care of the Hirschsprung’s related problems in very specific ways by world-renowned specialists in that area. A child should not have to be airlifted half-way across the country because hospital staff cannot get around to contacting previous medical providers regarding appropriate treatment for the current manifestations of the condition. No parent should have to be questioned so harshly regarding treatment requests when they have been through the same thing more than once and know what treatments have worked in the past.
We are grateful to the hospital staff in Cincinnati for listening to the parents, for understanding the needs of this special child, and for treating appropriately. We are grateful to the Ronald McDonald House for a very pleasant stay, albeit we all would have rather been home for Christmas. (Three full Christmas dinners was a pretty nice perk.) We are grateful for healing for our precious grandson.
And…6 weeks after being home Cael is gaining weight. Yes, weight. He may be a chunky monkey yet;-)
Zane thought his brother needed a welcome-home party, so the family got the bouncy house and had friends over to enjoy an afternoon of fun. Below the three brothers are pictured enjoying the fun.
