Sorry there hasn't been a post in a few days, we have been busy doing.... well not much productive. We finished her antibiotics on Friday evening so for the last couple of days we really have just been monotoring her, giving meds, and waiting. We went down on the diuretics from 3 times a day to twice a day because her "outs" were more than her "ins" , but we were not really losing any weight after that first initial pound. For several days we had been sitting at 12.8. Then Friday we went down to 12.6 and then to 12.5 last night. Today however her weight was back to 12.6. I know not a whole lot in the great sceem of things, but hey it was something. The size of her belly has also gone down by 1 cm and that has stayed the same the last 3 days. Yea! They will be taking her for her heart cath between 7 and 8:30 am today/tomorrow. Hopefully we will get some answeres and it will be something easy to fix, but untill then we wait.
So now on to what have we been doing to keep ourselves busy over the last several days. Well we have gone on several long walks. I wish I had one of those things to keep track of how far you have walked because we have probably walked several miles per day. We have also been making some new friends. At the begining of the week there were about 4 or 5 hypoplastic heart kids here all todlers. Now there are 3 or 4 and Kylie is the only one with out a chest tube. It is almost funny to watch all of these kids play together in the play room because they don't care about their tubes so they are just running around and the parents are left to try to keep the tubes from becoming tangled with someone elses let alone any thing else they can get caught on, it's like a giant game of twister and tag all rolled in to one. Also we have met a family here whose son is 16 years old and has hypoplastic left heart syndrome (Kylie's heart condition). He is here because he was having problems with his aorta and needed a surgery to fix the problem, but he is 16! I know there are people out there who are older than that with this condition, but it is so nice to see and meet one in person. I was so excitied I had to get Kylie's picture with him. We hope to get a picture of all the little hypoplasts with him before we all go home. It has been so nice to get to talk with him and his family and learn from their history. Also because he is older and just went through a surgery and currently has a chest tube, we are able to get more of an insight into what our little ones are feeling with all this because he can tell us. It has been such a learning experience. Thankfully, they have been very open and sharing, it is easy at times like this to be closed in and private.
On Saturday some, of the U of M football players came to visit the kids in the hospital, you should all be proud of me, I am refraining on making joke on the U of M team....but it is really difficult not to. I know they were some important people because each group of players required a security person with them and when we went down stairs there were 4 security gaurds at the elevator instead of the normal 1, but honestly I didn't know who any of the ones in our group were. They brought the kids teddy bears. Kylie enjoyed them because one of them rolled a ball back and forth with her for a while, my daughter has simple pleasures ( I really hope they get a bit more complicated as she gets older. I don't want her dating just any dork who can roll a ball).
A few therapy dogs have also made there rounds so Kylie has enjoyed playing with them. It is fun to watch her face light up and the smile she gets when she sees them. She walks over and shows them gentle (showing them gentle is what we tell her when we want her to pet something) and gives them a hug.
Sunday we got to escape for a little while. We took a small excuvation axe that we hid in a Bible and slowly dug a hole in the wall, that we hid by covering it with a poster.....just kidding (points to who ever knows what I am talking about here) Seriously, since our antibotics finished on Friday and we had nothing going on till Monday, they gace us a pass to run away for a while. We got to go home and go to church. It was awesome being able to get out for a while. Made it kind of hard to come back though. We had to though, no jumping parole and leaving to some tropical island to work on a boat :-D.
Today, Monday, we are waiting for the doctors to come in and get us set up for a heart cath. We can finally get it done. For the last week we have been treating the symptoms with out treating the cause. They are hoping that it is something easily fixable, well duh me too. They think it something that we can control with medication. They have a few forerunners, but her symptoms don't fit completely into any one of those. So we shall see. When we know more..so do you . :-)
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