My poor girl is EXHAUSTED!
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!
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4 comments:
Poor Brooklyn. Poor Mama. you guys have had a really rough week. I'm glad the tests are coming back clear, though. I really hope the feeding tube works out well for her. We do what we have to do to keep our kids as healthy as we can.
My daughter got a tube a year ago and it is the best decision we have made. She is stronger and doing better in PT. I was amazed at what a difference better nutrition has made for her. She is undiagnosed but her symptoms are very Rett like, we think a variant form of Rett. She has had to remain on Prevacid for reflux. I enjoy following your blog and will pray as you make decisions for Brooklyn.
I follow your posts on facebook, but just wanted to comment here and say that I'm thinking of you both this week and now that it's friday night-i'm hoping you are home and resting.
Thanks so much for the update. I was seeing your FB comments and updates and wasn't sure what was going on. Been worried about sweet Brooklyn! I hope it's going well and that surgery goes well. I really can't wait to see her gain some weight. Poor girly. She really is a trooper!
Hugs!
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