Here is "Nana," Aimee's Grandma, loving on Kayleigh tonight. She was saying her prayers over Kayleigh and posing for a photo. She is such a shining light to our family and we are forever grateful that she was able to make the trip down here, at 86 years of age, to see Kayleigh and spend time with the rest of the family. She is one amazing person and we love her to death!
Kayleigh is hanging in there. She continues to have agitation, which is no new news. They have started her on a continuous drip of prosticyclin to see if that, on top of the increased oxygen, Viagra and Nitric Oxide, will calm her down. Some one mentioned inhaled prosticyclin before, but the doctors feel that it would work better through her Central IV Line. Her tests have all come back clear and she does not have RSV! Woo hoo!!! She is currently on 40mls and is having no aspirates. Kayleigh was slightly anemic and did get a blood transfusion tonight. Thank goodness she still has that central line in, so they didn't have to upset her with putting in a new IV. Anything could set her off and cause her to spiral out of control at this point. All we can hope for is she makes progress with this new medication.
A lot of you have brought up some really great points and questions, as we have taken these questions to our doctors to get some answers. Here are some of the answered questions:
1) Next Echo? The doctors know that Kayleigh's pressures are up by the way she is acting. They don't need to get another echo at this time unless they feel her pressures may be reacting different than normal. At this time, Kayleigh's pressures are reactive and the medication they are giving her when she goes in to a hypertensive episode is working, so there is no need to measure what the pressures are doing.
2) Acid Reflux? Kayleigh is already taking a motility drug called Reglan and she is taking Prevacid for any possible cause of reflux. They have had her on this for a while, but I just found that out when you all started mentioning reflux. Thanks :)
3) Aimee's Dairy? She hates milk and many other dairy items, so that is not causing Kayleigh to have a good allergy in that department.
4) Post-Partem Thyroiditis? That was a question we had also, but the Endocrinologist and his reasoning, kept diagnosing it as Grave's Disease. They did get some blood work, so if we find anything different out, we will be sure to let everyone know.
5) Kayleigh's Thyroid Issue - She has Hypothyroidism and they currently have her on
6) Aimee's thyroid issue being passed on to Kayleigh and causing any harm? Research shows that having Hypothyroidism, which is what Aimee had before, brings on preeclampsia and low birth weight. If there were major problems to the brain or any other areas, it would have shown up already. Our neonantologist and the endocrinologist both mentioned that a goiter would have formed in Kayleigh's throat if anything were to be passed through the placenta during pregnancy.
I hope I answered all the questions, but if not, please know that we have taken in consideration everything that we read in the posts because we want to make sure our little Kayleigh is getting attention to every possible detail. Thank you very much for your questions.
Thank you so much Madi and Luke from Las Vegas for sending in your Kayleigh bracelet photos and letter. Kayleigh is going to be so excited to read all these one day! Please keep wearing them and sharing her story so she continues to touch the lives of others. Thank you!
Thank you June! I completely understand you having one of those days where you don't want your photo taken, but to show your support by taking one anyhow shows your true heart :) You have been nothing short of a miracle to our family. We appreciate all of your hard work and we look forward to continuing our partnership and friendship for a long time. You are one of the main reasons Team Freeman has been successful at RE/MAX. Thank you for everything!
Bailey, Thank you so much for taking a photo and making a beautiful sign for Kayleigh. You fit right in there with those princess's on your seat ;) I hear that you say "awww" every time Mommy does, but we certainly said "awww" when we saw your photo. I wish you the best and please keep praying for Kayleigh. She is such a blessing because of your prayers.
I apologize, but we are not posting the next two nights. I want to say it up front before I get a lot of emails or posts, wondering what is going on and where we went. If an update needs to be made, I will get it done though. We are driving "Nana" back to PA and staying for a night to bring home some of the best pizza known to man from the Pottsville Auction, one of the smallest town's, largest attractions :)
The Freemans :)