Today was Ellie’s second visit to the outpatient Short Bowel Clinic at Children’s.
Even though we are out the door, they keep good tabs on her. We have been in touch with her doctors and nurses by phone about minor things but clinic is a chance for an exam and a discussion about Ellie’s progress and where to go from here.
Her progress has been good so far. So good, in fact, that we don’t need to bring her back for a regularly scheduled visit for a month.
That is for a scheduled visit. We certainly will be back sooner for unscheduled things. Such is life with a kid that has three holes in her belly.
After a long day with a tired girl, s
After a long day with a tired girl, some highlights on today’s news:
She has grown steadily in her time at home. She now weighs 7.43 kg which means that she has gained 20 grams a day, a good growth rate for a PN kid. Too fast is bad and too slow is bad. 20 grams a day is good.
Her feeding is up to around 200 ml per day. She was at just over 100 when we left Children’s. It has taken some adjustment to get Ellie to eat in the new environment but she takes bottles every few hours during the day and does pretty well with them. This is a good step for her, but a long way from the current goal that we learned today is 1200 ml per day. We have a long way to go but have come a long way from the 24 ml days that were not that long ago. I think that measuring things in percentages is the way to go, sort of like the math that I do in my head on the treadmill…. Right now we are at 16 percent feeds.
Her ‘Ins’ (things going into her mouth or G-tube) and her ‘Outs’ (things coming out the other end) are in good balance. This was a big concern when she got her ostomy but it looks like she is doing well with that so far and her electrolytes are in good balance.
One bad thing was today’s blood work. The problem wasn’t in her blood, which we hope is as good as always, but getting the blood. Usually we draw it from her central line, without needing a needle to ‘stick’ her. Today, for the second time in three weeks, her central line wouldn’t draw blood. Things go in fine but can’t draw out. This could mean a small clot is at the end, or that the placement of the end has shifted.
We treated it with another round of TPA (Drain-o for IV lines) but had no luck even after three hours of soaking. Tomorrow we talk to Children’s about what to do next and whether another round of TPA is in order or something more complicated.
We are crossing our fingers that the line can stay.
A new central line is one thing I don’t want for Christmas this year.