Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, November 5, 2013

MayLee's Sweat test and Pulmo appt

 Neuro Endocrine Cell Hypoplasia of Infancy seems like such a huge name to describe such a little persons lungs. We met with Dr. U and discussed May further. She is almost text book case. I was able to take my long list of questions and have them answered. Some of them must have seemed so silly to the doctor but I am the momma and I am trying to understand this little person. After her pulmo appointment she had a sweat test. This test helps us to rule out CF. A funny little test. They place these electrodes on there arms and activate her sweat glands. Then she is wrapped with warm packs and then this heating blanket. She couldn't bend her arms at the elbows because everything was taped into place.  she looked so funny and I laughed until I snorted. The nurse thought I had lost it for sure. 

May kept looking at me like I was nuts for letting this strange lady do this. But she didn't seem too bugged.

We needed this contraption on for 30 mins. May wasn't about to hold still so we went for a walk.

 We went to the fourth floor terrace to blow kisses to May's little cousin Jenivee. It was a gorgeous day!

A nurse was eating lunch and noticed may had fallen asleep. She asked if she could grab her a blanket to cushion her. She brought her a warmed blanket and we wrapped May in that. Then she also brought this cute blue blanket that May got to keep. Love her! We won't get the results of her sweat until this week sometime. She also had some blood taken for other tests and I am not sure what they all were. I can't remember. I should :{ but I can't. It took two pokes to get her tricky veins to mind us. They must be like her momma's they hide as soon as the needle comes near. 

1 comment:

likeschocolate said...

Praying this test comes back negative! CF is not a thing you need on your list of things you need to deal with! Is there a link beween CF and all the other things this poor baby has had to deal with?