On Thursday, September 13, 2012 I woke up at 5:45am to do my normal morning routine. That consists of helping Sarah get ready for school.. she either drives in to practice driving or gets her bus. Then I come back in and get Thomas set for his bus at 7:30. Daniel is next. His nurse arrives around 7 ish, and the two of us work on the somewhat arduous process of preparing Daniel for school.
When doing his medicines, which all go in via his g tube... we notice a thick black liquid backflowing out of the tube. So we vented it some more...and the entire exterior tubing filled up. I filled a half of a large glass...with blood. Some of it reddish, some black like coffee. Never having seen this before..I OF COURSE call the Gastroenterologist we use at Connecticut Children's Hospital... and his nurse called us back. Very nonchalant... almost like I was bothering them...they told me they were calling in a script for Carafate... a medicine used for ulcers that works like an internal bandaid. And thats it. I was left very unsettled, very upset, and I still do not know what could have resulted in this amount of blood in his stomach so randomnly. So the "Julie in me" will be pursuing an endoscopy or some kind of resolution to actually check his stomach and make sure there is not something wrong. I am still worried sick about it.
What a gorgeous day today is...its Saturday...a gentle breeze, kind of cool, blue sky... but just a little while ago the handle on Daniel's wheel chair was broken. By accident, as our nurse attempted to tilt it, which it is supposed to do easily but Daniel's chair does not work easily. So the pressure on the handle cracked it on both sides. Now if I push it or even touch it...that handle is going to come right off.
So much for a nice walk with Daniel today.
It is a never ending rainstorm of concerns and problems. And although everyone has things that happen everyday, for a person who is medically fragile and not able to walk... these kinds of issues are magnified ten fold.
I feel like crying but yet...I have learned to just take a deep breath. Because the next emergency or major issue is ALWAYS right around the corner. I learned many years ago that my biggest enemy, sadly, is any kind of complacency.
So now what do I do??? I only have one wheel chair that is custom made for Daniel's body and his scoliosis.
I am just staring at this chair...trying to figure out what will work. Maybe I'll try duct tape...but I doubt it will be strong enough.
That's enough for today.
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