AAAHHHHHH! THE SQUIRRELS!

Squirrels are many things. They are furry, small creatures, and they are kind of cute. Completely unassuming and, seemingly, nonthreatening creatures. They do have teeth, though, and those teeth can be sharp, but the saving grace is that there is only one of them and it is really rather small, so what is the damage that it can do, right? Really, it can only get your toe and all it takes is once swift quick kick to punt the little rodent over the fence. But, what if the little thing had friends and what if they organized and, don't forget, they jump. All of a sudden you have a bit more of an issue. They can get at a bit more aggressive and they are harder to fight off and they can become overwhelming and more than just alittle annoying. The last few days has been a bit like being attacked by a pack of organized, leaping squirrels. There hasn't been any big problems, just a bunch of little ones, that don't have any real tangible end in sight. You want to meet my squirrels, let me show you the ones that are munching on my toes right now, annoying little rodents that are also known as Chest Tube drainage.
Kylie has two chest tubes, one on either side of her chest. They are to catch all the fluid that is collecting in her chest cavity as she is healing from her surgery. Her little body can absorb only so much excess fluid back into it before its get saturated and the fluid just begins to fill the cavity. If the fluid becomes too great, it constricts the lungs and the heart and that could cause some serious problems. So they put tubes in to suck out the fluid and we wait for the drainage to go down until it drains at a level that Kylie's body can handle it and we wait...........and wait......and, for the sake of something different, we wait. With Kylie's weight, we need her to not have anymore than 10cc's in an 8hr period. Then we need that to stay consecutive over a 24 hr period. So no more than 30cc's (once again for you math majors) in a day. Well Kylie has a twisted sense of humor, she will do 5 cc's one 8hrs, then 5cc's for the next 8hrs, and then she has 40cc's for the next one, then for the next day it will be 5cc's again. She is slightly mean, I think she enjoys it. We are stuck here until she decides she has had enough. They have tried to increase her diuretics but that is starting to effect her weight, she is down a pound since we started this. They also seperated them and gave them, each, their own drainage tanks. That way we can see if their seperate their drainage is small enough that they can pull one of them. We thought that the drainage was evenly, through both sides and that we could loose them both, tommrow. Actually, one side, we found out, doesn't drain, at all. There is a good chance that one can be pulled tomorrow. The other one is still flowing freely. These tubes are going to stop, it is just a matter of when. The nurses have seen some stop overnight and some go on for months. For us it has been almost 2 weeks, the doc's give us another week before they start looking for a diagnostic reason. For now, though this squirrel leads to another one, this one biting our knees.
Kylie has very sensitive skin. She doesn't bruise easily but we have noticed that her skin doesn't hold stitches well. That is a problem because her chest tubes are held in by stitches. We aren't worried about her pulling the tubes out so much, as we are that when we pull the tubes and we pull the stitches to close the openings of where the tubes were, they don't hold. We have already had that problem once. Her central chest tube, the one that got pulled earlier, stitch broke and it is reopen. It isn't deep but it is deep enough to cause problems, for example, infcection. So we get to pack her wound, a process my daughter "loves ever so much". My daughter is quite amazing though and strong. Her chest is coverd in bandages and those bandages are coverd in a kind of a mesh tank-top. Then her shirt goes over top of that. Kylie is very patient with people taking her shirt off and doing vitals. It isn't until people take the mesh off that she gets upset and cries. Even then, for the most part she will keep herself still and allow you to do what you need to do. She knows she doesn't like it but I think she realizes that she needs to have it done. She is amazing.
Another squirrel that is biting our nose, and seems to be an even more pressing one is that she is too stinkin' cute for her own good. She has been here. total, about 1/4 of her whole life. The doctors and the nurses all know her and her story and they love her to death (pardon the expression). To top it off, she is so cute, I blame my wife for that one. The staff here indulge her and shower her with attention and she eats it up. Also, it is hard because, it is a natural tendancy to be lenient towards a sick child. So, Kylie's discipline has been lax and you could start to see it in the way she acted. I know that she isn't herself and that she hasn't felt well but the way she was acting was starting to affect her care. She was getting to a point where she wouldn't eat, she was refusing to take her meds and she wouldn't sleep. So we had to set a routine for her and start up with the dicspline. Let me tell you, it is really hard to try and discpline a sick two year old, they are great at the guilt trips. I think an important thing for her,though, is to realize that even though, the heart issue, is a big part of who she is and a big part of her life, it isn't all that she is. She is so much more than the sum of her parts. We cannot allow her to use this as an excuse to be less than what I know she can be. God has given us an amazing little girl and it is our job to raise her right.

Finally, we have one other squirrel that is nibbling at us any chance he gets. It is a hard one to see, but he is there. He is also a squirrel that I want to make all families of special needs aware of. For lack of a better name he is the squirrel of guilt. I have noticed that Aubrey and I have been feeling guilty for being frusterated and upset, at times. We get frustrated about the chest tubes, the wounds, and the being stuck here for who knows how long. But, also we feel guilty, because we feel frusterated. We see other families around us going through so much worse and knowing that they would love to be where we are. We also see where we have been and how far we have come, and we know this is more of an annoyance, where we are now than anything else. So we feel guilty for how we feel. Maybe that is something you can relate to, as well. If that be the case, I would like to encourage you to recognize the good things God has done in our lives but to also allow the bad to be realized. If you just try and sweep it under the rug, ignore it and feel guilty for not always 100% of the time being happy, it is going to come back to bite you. You will feel those feelings, one time or the other and, I feel, by hiding those feelings, just allows them to grow until they are unbearable. By giving name to them and dealing with them, itis healthy and I think will allow you to heal from them. So I am giving you licensce to feel bad every so often, I think it could be healthy for you.

So here we sit, waiting. I have felt bad not posting more often, but with work and the whole lack of news, I don't think it would have been very interesting posts and you all know how I hate to be boring. Love to you all and may God's blessings be upon you.

P.S. please be praying for a little girl named Ealise, not sure on spelling, she was on her way home from the hospital, and her shunt failed. She had to be life flighted back and is now on life support and waiting for surgery in the morning.
-another little girl is Zarina, who is scheduled to have an unexpected surgery in the morning
-Also please pray for Brett's, the little boy on ecmo with the collapsed lung, he went home to be God a few days back.
- We met a woman yesterday who has been here for about a year. Her husband had a lung transplant and it didn't go well. Doctors are not expecting him to last much longer.
-Also pray for a man we met today, his wife just had brain surgery, and they are discharging her tommrow.
-and all the other families that are here.
Thanks for lifting up these families