I try to end my posts with Hope. I’m not promising that this time. I’m on an iPad without a keyboard but I just want to post an update. I’m also exhausted from only 4 hours of sleep so let’s hope I remember everything. Also, please forgive the lack of eloquence.
Dr. B thought he knew what it was because Levi will be inconsolable with pain and then 12-24 hrs later have a bloody diaper (can’t even call it bloody stool anymore really. There is no stool, just blood). The non-technical term is telescoping. It would show up on a contrast X-ray and requires surgery to fix.
Yestedays contrast was an enema which only goes so far up but it didn’t show anything. They had to wait for all the dye to leave his system to do an “upper GI contrast study”. Originally they said a two day wait but fortunately he was ready today.
He also had an echocardiogram yesterday. He has a hole in his heart. It’s “trying” to close but hasn’t succeeded yet. Dr. N said the good news is it’s fixable if it won’t close on his own. I have actually come to a place in my life where the possibility of heart surgery on my 5 week old, 9 lb. son is “the good news”.
He is on medicine and oxygen to treat pulmonary hypertension he has. She’s hoping treating that this way will allow his heart to not have to work as hard so it can repair itself.
Dr. R has him today. She said the GI specialist came by and said it’s not a milk allergy and he’s hoping todays study shows the problem. She also said she has never seen as much blood in a diaper as she saw from him last night. Today he looks really pale and his blood count is dropping so they “may have to give him blood (through a secondary IV) especially if he’s going in for surgery.
We had the same Dr. today for the contrast study that we had yesterday. She said she has made it her “personal pet project to figure out what’s wrong with this guy”.
Today’s contrast study also showed nothing and made him scream and throw up.
Now they are saying they hope to get an ultra sound and if that doesn’t show anything, then a CAT scan and if that doesn’t show anything, then a camera down his throat and maybe a biopsy, and if that mocking bird don’t sing…
If it is the telescoping it’s possible the intestine just happened to not be doing that at the time of the study so an ultra sound my show the area being damaged by that repetitive motion, if that’s what it is.
He now has a team of Dr.’s and specialists who are worried and frustrated and concerned. They are all puzzled and he’s not getting any better.
At this point I’m worried he’ll lose so much intestine it will never work and he’ll be sent home to live on IV nutrients, never eating, and a colostomy bag. Colostomy bags have always been a HUGE fear of mine. How will I raise a child with one for the rest of my life? How do you eat in a household with a child who can’t?