I must say, sitting in a room with a neonatologist, cardiologist, gastroenterologist, pulmonologist, all of their nurse practitioners, a social worker, discharge nurse, and our primary nurse with all eyes on us is quite a stressful situation. There is a lot of brain power going on that you can feel the temperature in the 10x15 room just heat up every minute that passes. A fear of mine is talking in front of a group, but I guess it was worse when it was a group of VERY intelligent people. Once we got going, it wasn't too bad to speak up.
Overall, the meeting went really well! It started off with our neonantologist going over all the wonderful memories that we have had in the past 206 days. Not to mention, I am still trying to forget the 3 months of hell just prior to ever meeting any of these professionals before Kayleigh was born. After we recapped all of our ups and downs, each specialist went over what they felt was best for Kayleigh's care from here on out so we can ALL be on the same page and tackle each problem one at a time.
Hopefully I am not confusing as I explain the order of events. I have mentioned them previously, but each procedure that is about to happen is going to get Kayleigh better and home as soon as possible. We are still looking at quite a few months in the hospital if everything goes as planned, but with the help from all of you out there who are going to pray over her through each hurdle is going to help make this a successful journey from here on out.
First things first, we need to tackle the airway issues. On Monday, Dr. Parsons who is a renown ear nose and throat specialist is taking Kayleigh down to surgery to do a more in depth bronchoscopy (with a video recorder) to figure out what is going on with Kayleigh and why her airways are closing up after every extubation attempt. After he is through and if he finds something he can fix right then and there, he will. If not, the doctors will put their heads together and either go the route of a tracheotomy to help heal whatever this long term problem is, or find another way to fix it. We are still unknown of the problem, but the renown specialist thinks the problem may be cysts which have formed on the vocal chords, not allowing air to pass through when the vent tube is extubated. We can only pray that this is the problem because the doctor can zap those cysts and fix the problem during his procedure on Monday.
After the airway issue has been taken care of, they are going to tackle the feeding issue. The reflux that is being aspirated in to the lungs are tearing up the lung tissue and for Kayleigh to have a chance to grow out of this pulmonary hypertension issue, she needs to grow back healthy lung tissue. The more aspirates she may have, the more damage those lungs take and the longer it takes to heal (if at all). Some lung tissue may not grow back and could cause long term damage or death as Kayleigh will not be able to supply her growing body with the amount of oxygen it needs when the body outgrows the lungs.
So, in order to fix the aspirate issues, we need to determine if in fact the aspirates are causing most of the lung damage. The Pepcin test we "thought" came back positive for micro aspirates, was not the case and we are still waiting for those results. We were told the results came back positive, but oddly those results were lost and can not be confirmed. There was an apology given and the subject changed before we could ask any more questions. So needless to say, they are doing another test and we should know something soon. If the test comes back positive, then the Nissen surgery and G-tube will be performed. The Nissen surgery is where they tack up the stomach at a vertical angle, which will not allow reflux to occur. The g-tube will feed directly in to Kayleigh's stomach by a tube inserted in to Kayleigh's abdomen.
Right now, Kayleigh is at 3ppm on her Nitric Oxide and is no longer being given her steroids (Hydrocordizone) to reduce inflammation or the Fentanyl which is the second to last of her pain medication. She is still on max dose of Versaed. That leaves her Viagra and her Flolan, which she can come home on both of those. Her feeds are up to 13mls/hr continuously, which are at her max feeds and she is tolerating every bit of it. She has put some weight back on, which she is now right back at 6 pounds. They are no longer administering antibiotics, so any signs of infection/pneumonia are completely gone. She is on the lowest setting possible on the vent, but just seems to have these last hurdles to jump, that is if she doesn't have any setbacks with the upcoming procedures. She is such a strong little girl that we have no doubt she will make it through.
Now, let's talk about CHOP (Children's Hospital of Philadelphia). Okay, that's it! (That was quick). Actually, since we are consulting CHOP on all decisions and Kayleigh is showing a lot of signs of improvement, something is being done correctly and there is no need to uproot our family to get the same treatment up there. Although, if there is something that pops up along the way that CHOP can offer that we do not and that Kayleigh needs, then we will be gone in a heartbeat. Let's pray things don't go in that direction. However, we do have awesome family and several people who offered assistance if we must go. Thank you everyone for being so awesome and making us feel comfortable if we need to head to Philly.
So now this leads to our prayer requests and with all this mess, what do we pray for first??? Well, let's take one step at a time and pray that the bronchoscopy on Monday shows simple signs of a simple problem and can be simply fixed. Then we will decide where to go from there. I will be sure to update you all the rest of the week and weekend on Twitter, which sorry I didn't tweet a lot these past couple days. I promise to get better with that because I know how I would be if I was in your shoes waiting for an update. (Nerve Wrecking Huh?)
Since my last mistake with the "Sir Spamalot" baby photo contest, people advised me to submit a photo to the Regis & Kelly contest going on. I sent in our main photo with the ring around Kayleigh's wrist and hopefully they will allow people to vote soon, but keep an eye out for when they open the voting. I am guessing that is how it will work, but one way or another, we shouldn't get bombarded with unwanted spam mail this time. I am glad I cancelled that quick! Also, if you missed my tweet, I finally got the bracelets boxed up and ready to send out. I will be sending them tomorrow morning after I take the kiddos to school. Thank you for your patience on that, but I am excited for everyone who gets to show them off and share Kayleigh's story with others.
That leads me to end my post tonight with a piece of advice. Day in and day out, our faith is being tested and day in and day out, we pass! No matter how hard our battle is our how bad we want to blow up on the first person who aggravates us, we remember who is testing us and why He's testing us.
We were not given this battle with Kayleigh because we are being punished or because we we did something bad in our past, it is because we are strong and we can handle it. It is because God wants you to see that no matter how bad our situation is, we can endure the pain and turn it into something good for the sake of you learning from it only to make a difference in your own life.
We are being tested far beyond what most people see on the surface, but we are handling every detail with the sole purpose of glorifying God. You all don't see those details, but Aimee, myself and God do, and how we react to those smaller details is how we can pass each test. There is no doubt that we have and we will continue to pass each test given to us! First, because we are competitive and we don't like to lose, but because we love every single one of you who have been following Kayleigh's journey with us and we want nothing more than for you to trust in God through your own trials. He is not punishing any of us, but He is only testing how we react. Do something good with something bad! Pass your test!
God Bless,
The Freemans :)
