Another long afternoon at Lurie's. This time we brought Zander so he didn't feel like we were leaving him behind. Last week really took a toll on him. We were looking at Zoë's baby pictures over the weekend and he teared up. He told me "mama I missed Zoë". It broke my heart. My little boy shouldn't have to deal with these type of emotions at 4 years old.
We met with our GI specialist. He was great and we appreciated that he sees another Heterotaxy child. He asked us a gazillion questions, looked over her massive chart, and feels she's not backed up enough to make her produce black or white stools. He said its a gut infection. Now the funny thing is that all the doctors in the ER (including pediatric surgery fellows) said it wasn't a gut infection or a virus. How the doctor explained it to us was that the bacteria in the intestines was eating away at the bile, hence the white stool. He doesn't want us on the stool softener unless we feel she needs it. He wants us to try some probiotics to see if this will help. Her stool seems to be getting better color. It's still chalky and pale but it's no longer white.
So hopefully this issue resolves itself soon or we'll be back to the drawing board. We see Pediatric Surgery in 2.5 weeks, her pediatrician in 3 weeks and her immunologist in a month. Lots of appointments. It's quite sad that the receptionists in the main lobby know you by name. At least all the staff is so friendly to make our visits a little bit easier.
Thank you for the out pour of support! The Facebook comments, texts and emails really mean a lot to Mike and I. I'm one of those people that need to talk about our situation or else I self-combust. I know some people don't know what to do when a friend is hurting, but just checking in is the best medicine for a family going through a medical journey.
My Heterotaxy mamas really have helped in the last week as well. Social media has some major advantages. It brings people together who have similar situations.
We're gearing up for CHD awareness week! It's February 7th - 14th! So please wear red for all the heart warriors!
I know what you mean about the hospital knowing you--for me, it's the parking attendants who collect for the lots and garages we use most often :p
ReplyDeleteSo happy they have some answers for you. Everyone at our various hospitals know us by name too. Sometimes it makes life a little easier as people already know your situation.
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