Sunday, February 27, 2011

Brett's Update

On February 11, Brett had his monthly IVIG (Immunoglobulin infused intravenously). Although it takes most of our day, it is an outpatient procedure. I left the house at 8:30am and got home at 5:30pm.
UNC's pediatric infusion room

Since Brett no longer has a central IV access, he had to get a PIV (peripheral intravenous access) put in just for the infusion and then have it taken out as soon as the infusion was over. Not a fun thing, but still better than having a line that is inevitably going to get infected. We hated that the port had to come out - we hoped it would last him years, but now that it's over and done, we're glad he doesn't have access so his body can sort of take a rest from having so much "hardware" inside.

Brett has gotten very used to this room!

Gantt and Brett both had a cold or some sort of virus affecting them that week, runny noses and coughs - it started over the weekend of the 12th, and I was getting concerned because of the frequency and severity of Brett's coughs. At this time in his life, Brett doesn't cough at all when he is at baseline. I contacted his doctor when the weekend was over and the cough wasn't really getting much better. He called in some oral antibiotics, Omnicef, that Brett would take for 10 days just in case the virus were to kick up the bacteria that is always in his lungs. We did this in hopes that he wouldn't develop a bacterial infection in his lungs.

He thinks it is a playground!

As the week progressed, the cough (for both boys) improved. was Brett's last scheduled clinic visit was on Friday, February 18th. He saw his GI doc and his pulmonary doc. Everyone thought his lungs sounded great. His cough was gone, and he seemed to have dodged a pulmonary infection. Brett's did lose weight, but we chalked it up to fighting an illness, plus having been on antibiotics that usually create extra loose stool. He is still desperate need of weight gain and growth. He has grown a little taller, but he needs to pack on some serious pounds. Please keep praying for that - we are doing all we can to help facilitate that growth, but his body's got to do it on it's own.

Mr. Alan plays his guitar and sings for the kids


This week my "angel mother" and "darling dad" are taking care of the children while we are away. And as you well know, caring for these three can be a joy, but it is never a walk in the park! Well, When our first general session began for Chick-fil-A Seminar, I noticed that I had just missed a call from Brett's doctor. I was concerned because it seems not much good can be going on when your doctor calls you from home on a Sunday night. But, it wasn't an emergency - just that the stool samples we got in clinic on Friday the 18th came back and had shown that Brett has c. diff, and rather than explain all that, I just decided to link it to an explanation if you aren't familiar with it and want to read about it. Mom had been concerned about him having very frequent and loose stools, so that made sense because that's what happens when you have a c. diff infection. This is Brett's first one. Thankfully it is no emergency, and he called in a prescription for Flagyl, the medicine they use to treat this bacteria overgrowth. Hope it settles down soon.