Princess Kylie

PRINCESS KYLIE MAKING HER ROUNDS AND VISITING HER PEOPLE

Suprises are usually a good thing. You know, a suprise party on your birthday or a suprise day off from work, those kinds of things are wonderful to get. Then there are some suprises that are not so wonderful, a suprise flat tire or a scorpion in your shoe that you didn't realize was there until you put your bare foot in (saw it in a movie), those are suprises one would rather not have. With Kylie we have had both. We have had the good suprises, things like watching Kylie heal and get better after all the doctors had told us that she wasn't going to make it. We have, also, had the bad surprises, 16 hrs after we had Kylie home the first time she started having sezuires and we had to take her back to the hospital. Praise God that we have more good surpises than bad, but some days they make you long for a boring day :-). We had a surprise yesterday and this one wouldn't fall in to the good column, but don't worry it doesn't really fall into a bad column either. This one is more of an annoying surpise. Kylie has two more chest tubes left and they have to stay in until her drainage drops down to about 50cc's or less in a 24hr period. Well, we were getting close to it. Over the last day or so, her drainage had gone down remarkably and that green light for the pullage of the tube was getting brighter. But then Aubrey noticed something, strange, she noticed a WORM. "A worm?" you say, probably with a slightly wierd look, maybe disgusted look, "There is a worm in Kylie, like one you would find in apple." Nope my daughter is not doing an impression of a "BAPPLE" (as she would say ) . A worm, in this case, is a clot in the chest tube line. Kylie had a plug in the drain and once they worked it out she started back up again and, about doubled her output. So that green light has dimmed alittle and gotten smaller. There is really no way of telling when her tubes will stop draining. The staff here has seen them go for months, on very rare occasions. and some suddenly just stop. It is really up to Kylie and God, and with the way Kylie is being treated here, she may just want to stay forever.

Kylie, seems to be one of the unoffical mascotts of Mott's Hospital. She is treated like a princess here, don't get me wrong, she is one :-), but I think it is going to her head a little and now that she has a little tiara, a gift from Julie (thanks it is very cute), there is no stopping her. She loves to roam the halls, visiting her people and soaking up the attention. The fact that she is adorable just makes it even better. She gets stopped all the time in the hallways and eveyone is taking pictures of her. In fact, they had a professional photographer taking publicity stills of the hospital, and they stopped to get a few shots of her. It was really quite fun to see the joy she was giving to people and the joy she was getting out it. That is the best way I can describe her is just a joy. I mean, we have our issues. she is two after all and she is going to test things, but she is the closest thing to the picture of heaven that I have ever experienced and I am so thankful for her.

There is one family that needs prayers here, well I am sure more than that, but they really need it now. There names is Jessica and Robert and there son Brett isn't doing well at all. He is in the ICU and on ECMO. Anyone remember Kylie's experience on ECMO? Well Brett isn't looking too much better, in fact I think is sicker. Brett has progressed as far as he can go on ECMO and it is time to take him off. That, in and of, itself is stressful enough. But, so things don't get boring, one of his lungs has collapsed and they can't get it reinflated. The doctors have given him a 20% chance of making it through this. I know that is bleak but I know, through God, all things are possible becasue we were there. We were in that bed. watching Kylie bleed to death after ECMO. The doctors had done everything they could and there was nothing left to do. So I prayed and I asked you to pray, and you did and, against all odds she got better and here we are. I am asking you to do the same for this family and bath them in prayer. Let them feel it surround them. It is ultimatetly in God's hands but I know the power of your prayers because you have blessed my family with it. Thank you for your prayers and your support, we are blessed by it.