10/25/08 - Hanging In There

First of all, I want to thank every single one of you for the kind words and prayers. I have my phone with me at all times and I can check my email from it and every time we got an email, it brightens up our spirits. You all have helped us stay strong through this rough patch. Out of everything we have been through so far, this is by far the hardest part of the journey. The reason is because of this up and coming surgery. It is so hard to see Kayleigh being faced with so many challenges at once and have to be in the best shape to overcome them all for a chance at life. All Aimee and I can do is have faith that things will go perfectly for Kayleigh to come out of this unscaved. Tonight, Aimee told Kayleigh that we can't wait to tuck her in her own bed each night and kiss her little love scar.

It has certainly been a rough two days. Kayleigh is slowly making some progress from her nightmare of a day yesterday morning. She has been heavily sedated, but every time the medicine wears off, she starts to desat to the point where they have to "bag" her to bring her sats back up. To bag her means to manually pump air/oxygen in to her lungs to bring her sats up since she can't do it herself. They had to do that at least four times today, which is not so great.

Her blood pressure is also elevated and does not seem to show a lot of improvement over the whole day. They are administering medication for that and starting tonight at 8:00, they did a much larger dose to help bring the pressure down. We should and hope to see some results after a couple doses. They will be giving that to her every 6 hours. Besides that, her right leg where she had the catheter put in is a shade of purple. They call it "cath leg", and we were told it is normal. They are keeping an eye on it to make sure there is blood flow and her foot has a pulse. It was blotchy yesterday, but the whole leg is purple today. I hope to see improvement with that as well.

Tonight while we were visiting, Aimee held Kayleigh for several hours and to our amazement, Kayleigh was doing pretty good. At first, Kayleigh was out cold from being sedated, but she started to move around and peak an eye out to see what was going. We knew she was coming down off the medication, so we were very worried that she would start to drop her sats like she did all day yesterday and today. As more and more time that went by, she would move as Aimee spoke to her and her sats were looking better than normal. Kayleigh was really being comforted by Aimee's voice and it made our visit so wonderful. It gave us more hope that she is moving in the right direction. We just hope she keeps it up.

We spoke with the cardiologist and they are planning on doing the open heart surgery to close the VSD once Kayleigh recovers. They are scheduled for Monday, but if we need to push it back because she is not ready, then they will be flexible enough to do so. Although, they want to do this as soon as possible so their window of opportunity doesn't run out. The resistance in her lungs are already high, so it could be any day that the pressures can change from reactive to fixed. We just hope she can recover quick enough to get this major surgery complete before our time runs out. We are racing against the clock right now.

We are supposed to meet with the heart surgeon who is doing Kayleigh's surgery tomorrow to get more details and his perception on this whole situation. We are curious to hear what his take is on all this and what he thinks her percentages are. Our biggest fear right now is that Kayleigh is not strong enough to handle this kind of surgery. Being that she had such a horrible response to this minor procedure, I am afraid of how she will do with open heart surgery. I know she is a strong little girl, but the stats don't prove the odds to be our favor right now. The cardiologist said they want Kayleigh to be 100% cleared in every aspect before they do this surgery so we have the best possible chance of everything working out the right way. She will be considered in critical condition for the first week after the surgery and there is a large chance they will leave her chest open in case something goes wrong and they can get back in there. The hard part about all of this, is we have no chance or power to make any alternative decision that will help. Because of how severe Kayleigh's situation is, she will die without the surgery and there is a high chance she could die from the surgery.

After talking with some of the doctors and nurses, we heard that several of the doctors have consulted with colleagues from other major hospitals around the United States about Kayleigh. They wanted to make sure there decisions were the correct decisions and if the majority agrees with what they are planning to do, they have to go with that decision. My take on it, is that with Kayleigh being smaller than the expected size to close he VSD (She was suppose to be 2000 grams) and the unique situation with her counterpart (Pulmonary Hypertension), this is no ordinary walk in the park surgery. VSD's are closed every day all over the world, but with all the challenges that are involve with hypertension and elevated pressures/resistance, this makes for a nightmare of a challenge for a surgeon.

The doctor doing our surgery is a younger heart surgeon who comes from some of the elite surgeons out of Boston. Some of the best heart surgeons in the world have given high praises of this doctor, so we more than approve of him handling our little girl's heart. Please pray that God will guide this doctors hands to successfully fix our baby girl so she can come home to a family who will love and cherish every minute of every day with her.

Do you think this doctor realizes how special he is in that he will be the only man in Kayleigh's life who would ever truly and literally mend her broken heart? Without a doubt, I am seriously one jealous Daddy, but a completely thankful Daddy for this surgeon's knowledge and skills that God has blessed him with.

God Bless and God Please Help!

The Freemans :)