Over the past couple days, we have been on hold with any type of surgery for Kayleigh's feeding situation. Kayleigh's belly started to blow up last week and with the fear of an infection, many tests were being done to catch whatever was causing this to happen. They stopped her feeds and then things started to fall apart quickly.
The first thing that took place was bleeding in her trach, which could have been caused by numerous reasons. They feared the trach was a size too big or they feared Kayleigh was having bleeding in her lungs that was coming up in to her tubes. They could not lay a finger on what the issue was, but chalked it up to be minor rubbing on her trach site or in her esophagus. This problem happened twice.
The second issue happened the other day when Kayleigh's Flolan central line backed up and she started to desat pretty low. They figured out the problem really quick and administered her Flolan through a syringe and it stopped the desaturation from happening. This goes to show that Kayleigh needs that Flolan or she could have a hypertensive episode that could cause her to fall apart quickly. The central line showed no issues and they started her back on the Flolan at the original site. There is only a 3-5 minute window if this central line in kinked or backed, which will then cause some serious pulmonary hypertensive episodes to kick in.
The third issue was when Kayleigh developed a fever that was sitting right around 100 for a full two days, but out of no where dropped back to a normal level. Her temperature has stayed in the same position all day yesterday and today, so we are happy to see whatever was causing that has gone away. It could have been from all the tests they were doing to see what was wrong with her belly issue. Too much poking and prodding can make me sick too.
The last issue which has surfaced again after 5 months is Kayleigh's hernia. She actually has two of them in her bottom area that need to be addressed before going home. They have decided to pass on the MRI for Kayleigh's eyes right now and do the procedure to fix these two hernias when they do the PEG procedure. We will find out later when the MRI is to be scheduled. The PEG is what they decided to do instead of the G-tube. There is not a whole lot of difference between the two except the PEG is less invasive.
So, with all the issues Kayleigh has had over the past few days, she has made another astonishing turnaround and gotten herself back on track. There is no more fever, no more desatting, no more trach bleeding and she is currently back up to full feeds. They have talked about doing the PEG procedure either at the end of this week or the beginning of next. This is such a great, quick turnaround for her and we are now breathing in a breath of fresh air. We spoke with a doctor today about getting her on the home equipment after she recovers from the procedure and bringing her home shortly after that. How awesome is that going to be??? WOO HOO!
Many of you asked about her head circumference and they did her measurements last night. Her head and belly are large, but they are proportionate for her size. If it is big, then that just means she is going to be smart or she is just bull-headed and we know for sure she is just that. She weighed in at 8lbs an 3oz and we are happy to announce that as of yesterday, Kayleigh is now 9 months old.
If you haven't noticed, I have added
TheBlogFrog to Kayleigh's site for all of our Kayleigh Followers to become members. I decided to take down the blog scroll and put this up in it's place. It will allow all of those who have your own blogs to become a member and every time you come to Kayleigh's blog from your own personal blog, your blog link and blog name will appear for all the others to see. So, if you have not become a member of Kayleigh's BlogFrog community, sign up where the link says "Become a Member" over on the left toolbar. It is a great way to get your blog seen and story told from all the thousands of people who visit Kayleigh's Story each week.
Please continue to pray as Kayleigh is on the home stretch. Pray there are no more setbacks and all the procedures will go smooth so we can prepare to bring her home. What an amazing day that is going to be and I hope to celebrate with every single one of you through our posts and comments. You all have been such a wonderful support system for us and we can't thank you enough. We received over 65 bedtime stories and still have room for more if you want to write one. Just email me at
Adam@TeamFreemanProperties.com Thank you all so very much!
God Bless,
