BabyM and BabyR had the flu (respiratory) a few weeks ago. With the help of our primary care physician we made it through that. Then a week ago I found myself in the ER with BabyR for IV fluids. We thought it was an FPIES reaction to something in dye free CVS brand “Benadryl” – then Mari started vomiting the next day and we knew it was a bug. The steps I took to make sure our doctor knew this was an FPIES reaction really made this kind of comical in a way. Ultimately I think it was a stomach flu and an FPIES reaction for BabyR but I am not going to go into all my reasoning – I am just too tired. So back to the bug, the kids have been sick for the entire week. Although they have markedly improved, they continue to vomit once a day for the past couple of days – which brings us to today.
We had an appointment with the GI doc – Dr. Fancy Pants. I am not so fed up with him at this point. In fact, I feel that he has proved himself recently. Anyway, BabyM has FALLEN of the charts in weight. BabyR is now falling. They are 22 months old and 19lbs. 2oz and 24lbs. respectively. Bottom line – he told us that because of their weight (particularly BabyM) it is likely that they will be sick all winter and continue to fall in percentiles. He gave us 4 weeks to try and get BabyM REALLY gaining before intervening with a nasal feeding tube. I have NO idea how anyone is going to keep a nasal tube down a toddler’s nose all day every day. When I asked the doctor about this he said we may have to put in a g-tube…surgery to put a feeding tube directly into the stomach.
So here we are – this is ONE of the places I have really feared being in.
When I got home opened my email to find these words from a friend:
As I started to pray for you and your family yesterday, I couldn't get a word out. I just started to cry. I feel all your pain...and your family's too. After so much crying…peace came over me. I know that no matter what happens, it will be hard, it will be painful, but afterwards...it will be ok. The rain will fall (blessings) and the sun will shine again.
I am with you.
At this moment these words are all I am hanging onto.