3/17/09 - Clock Starts Now (Again)





Today was a great day in the sense that it cleared up a lot of our questions. We spoke in the hall with the nurse practitioner and one of Kayleigh's neonatologist's. The ironic thing is, the doctor that is in the rotation is the same one who was in the delivery room when Kayleigh was born. She may be the same doctor who is able to send Kayleigh out of this hospital.

The first topic of conversation was her stomach issues. They are still running tests to determine if this is an infection of some sort that is causing her tummy to blow up again. The good news is Kayleigh is passing things through and the repogle tube is bringing air out of the stomach. The x-ray shows improvement, but they are not going to start her feeds back until she is cleared from any infections. They are leaning towards another urinary tract infection, but we won't jump to conclusions until the tests come back.

They won't do any surgery until this tummy issue is cleared up. The gastroenterologist are determining whether to do a G-tube or PEG. They are basically the same thing and serve the same purpose, but the PEG is less invasive when it comes to the procedure. The PEG is typically used when the Nissen procedure is not being done and it is surgically placed from the inside out instead of performing a larger incision with the G-tube. I have a feeling we are going to be doing the PEG, which we are 100% comfortable with.

So that lead us to the most important question of when will Kayleigh be able to go home. We were given a month about a week and a half ago, but since we have been put off for a week with all these reflux tests (Impedance, Barium Swallow and one other test), we still have a month left. If things going smoothly, it could be as little as three weeks. That is if nothing else comes up in between and pushes anything back. So the one month clock starts now, again!

So speaking of set backs, we all had a scare that turned out to be nothing at all. Kayleigh was in her bouncy seat today and when one of our primary nurse turned to look at her, she noticed some bright red blood in her trach tube. Kayleigh wasn't in pain, crying or showing any signs of respiratory issues, so it didn't worry anyone that Kayleigh's lungs were bleeding. She must have scratched something in her throat with the trach and it was sucked up through the tube. They are going to keep an eye on things in case this happens again, but until it shows signs of respiratory problems, they are not concerned.

So please continue to pray that things move in the right direction so Kayleigh can get out of there. I feel like the longer she stays, the more things pop up and start causing panic and stress amongst everyone. We do need her healthy, but being at home will reduce the amount of chance for infections or any other complications. We have heard a lot of stories on how children make a huge improvement once they get home, so we are praying that will be the case.

Thank you to all of those who have been a part of the Donation Giveaway. Aimee and I are truly blessed by everyone's generosity. Aubrey and Katie have done a wonderful job at putting the program together and we can't say enough wonderful things about them. Thank you so much to all the businesses who donated their items to help our family with this program too. The items are so awesome and we wish you all the very best. There is one week left and we are all excited to see who wins some of these amazing packages. Thank you all tons!!!

God Bless,

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