Thursday, June 23, 2011
It has been a LONG week! We met with Dr. Gohill last week for our consult and the decision was made that a feeding tube is needed for Brooklyn and should be placed this summer. It is weird how I can type that statement so calmly now...... a feeding tube used to be my WORST Rett Syndrome fear. I really am not certain why actually, but honestly, I am ok with the decision. My sweet angel is only 27 pounds and had dropped to 24 pounds this winter during her battle with constant illness. I know that she needs the tube to supplement the calories she can't get during the day. However, prior to the surgery for the tube there are tests.....lots and lots of test. Which leads me to this post.
Monday: Arrived at Lutheran hospital at 7:45 am to start the day with a sweat chloride test - to make sure she does not have cystic fibrosis (yes, on top of Rett Syndrome - that would for sure be unfair!) Following that there was the urine test - which they use a bag taped to her to catch the urine - which is WAY better that doing a cath which is of course the alternative. Next on to blood work - four vials to be exact! They got her on the first poke and she was a trooper! The final test for the day was the swallow study. This involves mixing barium with water and having her drink it through her sippy cup (which she ROCKED!) They then coated a variety of food in the barium powder for her to chew and swallow. I have to admit it was cool to watch!
Tuesday: Back to the hospital after FASTING for twelve hours to REdraw the blood and get another urine sample - her glucose leves were high from Monday :( These did not go as smoothly for us but eventually.......success! As well as an "all clear" with these results too.
Tomorrow is Friday which means back to Lutheran in the morning for her endoscopy and bravo probe placement - these will check on her reflux - which of course we pray is FINE!
Once all of the above mentioned tests come back - if all looks well the surgery for the feeding tube will be scheduled.
So, if you happen to see me this week and it looks like I haven't sleep in a week, you are right....I haven't!
Posted by Kelly at 2:24 PM