12/21/08 - Plan of Care!!!

Okay Everyone. Here we go!!!

Aimee and I both sat down with our cardiologist's nurse practitioner (CNP) tonight and we may have a game plan set in place to get Kayleigh's pulmonary hypertension under control and possibly a one way ticket home. Prayers are the only way through this wild adventure we are about to take, but I am more confident than ever that Kayleigh will succeed. Each task at hand must be completed successfully before the next process can begin and this is not going to be a walk in the park. I spoke last night a little bit about the JG tube that they may be putting in Kayleigh's intestines to help with her reflux/micro-aspirates. Tonight, I felt like our CNP has unlocked the door to Kayleigh's only path home. Thank God for such intelligence.

Since Kayleigh has been on two of the best medications to treat her pulmonary hypertension (O2/NO2), it is evident that it is working, but something else is keeping Kayleigh from getting those pressures down. Look at it like a wall that divides two sides...on one side is blood and the other side is lungs. For the oxygen to get in the blood, it needs to be absorbed through that wall. If that wall is damaged, then the oxygen will not get through like it is supposed to. Simple right??? Well, since we have been paying attention to one side where the O2/NO2 helps open the lung sacs to fill up with oxygen, we completely forgot about the wall where that oxygen still has to transfer through to get in the blood to oxygenate the rest of the body. Everyone just figured the sacs weren't opening, but it is the wall itself that may be causing the problem.

That problem lies within the lungs and the lung tissue where that oxygen is transferred from those sacs and in to the blood. Two main reasons that lung tissue can become damaged is too much oxygen (high vent settings) or reflux from aspirations. So at this time, they are lowering the amount of oxygen Kayleigh has to be on so her oxygen saturation can sit in the mid 80's instead of the 90's. There will be no damage to the other organs for satting lower, even if it is for long periods of time. This will reduce the oxygen in the lungs and not cause anymore damage to the lung tissue (wall). Also, by inserting the JG tube to feed Kayleigh, that will allow Kayleigh to not have any chance to aspirate her feeds to where she inhales it in to her lungs. When that happens, the stomach acids eat away the tissue in the lungs causing them more damage. Our main goal is to prevent anything from destroying what tissue she may have left so she can grow new lung tissue.

That sounds pretty easy to take care of except we all know that Kayleigh's condition right now may not be well enough to handle a procedure that involves anesthesia. It will be done at Kayleigh's bedside so we don't have to worry about transferring her to the operating room. Although, we all saw what happened when she had the cath procedure that nearly took her life right before her open heart surgery. On top of that, if the lung tissue is damaged, it will not work to transfer that oxygen in to the blood anymore as intended. We have to hope and pray that the tissue is still good.

Once the JG-tube is done, they can enter a scope in to Kayleigh's lungs to see how damaged the tissue is and if there are any narrow linings in the lung sacs. That will determine Kayleigh's prognosis and if this can be treated or if Kayleigh's lungs are damaged for good. If the tissue is fixable, they can enter a suction tube in with the scope to clear out some of the narrowed sections. The only problem right now is Kayleigh's entry way down her throat handles a 3.5 size tube and she needs to handle a 4, so her throat is too small at this point and needs to grow. The JG tube will allow us to give Kayleigh a higher calorie feeding, but delivered at a slower pace to reduce chances of bowel/digestion issues. If they send the scope down and find out her lungs are damaged for good, her body will continue grow but her lung tissues will not. That means when the body grows and demands more oxygen, her lungs won't be able to provide it for her and soon the demand will be too much. Sadly, Kayleigh is too small to have a lung transplant anytime soon.

Once we get past this stage, we will be able to determine which route to go next. The road is going to be long, but with the help of God and your prayers, we can accomplish anything together. Aimee and I are just so pleased to hear there is a game plan and we are more than blessed to be able to spend more days our precious Kayleigh.

PS: A few of you asked about Brandon and Allyson and what you could do for them. Please email me directly and we can talk more. They follow the blog too and I don't want to spoil any surprises :) Email me at: Adam@TeamFreemanProperties.com

Thank you everyone again for your support and donations through this trying time. We don't know what we would do without you. You all are a gift from God and this is going to be such a blessed Christmas!!!

God Bless,

The Freemans :)