When we came home from the NICU Marisa was 8 weeks old. She received a G-tube for feedings in the week before her discharge, and Rx's for a multitude of meds. We whittled down the meds over time to just Synthroid (for hypothyroidism), and kept the G-tube until she was 16 months old. Over that time she gradually received more and more nutrition by mouth. In most cases the stoma for the G-tube seals naturally with no need for a surgical closure, but in Marisa's case, it was under the knife again to have the site sealed. Because she was born with Transient Myeloproliferative Disorder (TMD), she was followed by the Hematology/Oncology department at one of our childrens hospitals, starting with every other month, then every 3 months, every 6 months and finally once a year until she "graduated" at age 6. When her wonderful doctor told me she did not have to come back unless she became symptomatic for Leukemia, I even shed a tear. It is hard to walk away from people and places you've known for years, even if the association isn't the best. The doctors, nurses and related staff in that clinic are great people and we had grown fond of them over the years.
Marisa's thyroid function is still tested every 6 months via blood draw, and I have requested a CBC with diff be done with her thyroid screen just to stay ahead of the game (hopefully) if her counts awry. Well, a few months ago, her WBC and MCV veered out of the normal range. To make a long story short, we are now back to being followed by the Hem/Onc clinic again. We will be back in their office next March for a check up. When I read blogs about kids currently battling the evil disease of Leukemia, I can't even express how thankful I am that Marisa is not in that group, but I do wish we could have moved on for good from being a patient at Hem/Onc. Great people, but not a place I want to go.....
Do you take her to OHSU by chance? Lily was in the NICU there for a week when she was born..
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