A bad day for daniel and his family

As most of you read from Joshua's blog Daniel and his family had a rough night last night and it continued into this morning he is now on ECMO as of 1 his afternoon also something is wrong with his brain they did an ultrasound of his brain at parents request and there is something abnormal and they aren't sure what it is at this point if it is a bleed when they start using anticoagulants in 24hrs it could get worse but they also can't take him back to do a ct scan for at least 24hrs. Daniels family isn't doing so well they could use all the support and prayers that they can get right now. As i know more i will keep everyone updated.

with love the Wilson family

Once in awhile

So they actually got something from the cultures they sent she has what they call a Gram + rod and a Gram - rod that grew they don't know what they are yet but they will most likely be starting her on an antibiotic to cover everything so that we don't end up back in the icu or where we were July 2nd of 2008. We rarely if ever have anything grow back from the cultures that they sent in a way it is a good thing that something finally showed up so that it doesn't mean that she has been withdrawing it actually means she is sick in other ways it sucks because this grew out of her red lumin on her hickman now the reason that is important is because back in november? that lumin broke so they spliced it and fixed it well every time this happens it hightens the risk of infection well the same line broke again this past month and well now it has an infection thank god though that they caught it early enough that we should be fine they are reculturing and starting antibiotics two diffrent ones that are broad sprectrum antibiotics so we shall see how this goes.

For no reason

Well today Shayla decided to run a very high fever of 103.2 and that lasted pretty much all day it is now finally 101 but it took a cooling blanket to get it down to that. it has been a rough day for her she was still able to handle being off the bi pap for a little bit today and they did pull every culture they could to try to rule out everything they could if nothing comes back the only other thing that it could be is withdraw from her meds but Dr. law doesn't think that it is that because of how high it was but it isn't much higher then the one she had on Monday that one was 102.8 and they said that, that one was just withdraw so if that is what this is i think we just have to ride it out cause we need to get her off these meds even if it is going to take a couple of month she doesn't need them for pain anymore it is just addiction now.. i have loaded a pic up that i took yesterday off her when she was soo cute. i will keep everyone update on how she continues to do.

She is also starting to try to talk and it is sooo cute when she does try cause she hasn't learned that she still needs to breathe so she just turns completely red even the doctors think it is cute when Dr. law saw her do it yesterday and the cute squile that she does he said "i never heard her do that in the ICU" its like she didn't she just started doing it this week i love it next week they are suppose to do a swallow study on her and hopefully start doing some food by mouth they wanna get her feeds up so that we will be able to have her off for a couple of hours a day. we will see how that goes also we should be able to get the stuff for home care so we can start learning everything we need to i can't wait there is soo many people that wanna meet her. thank you everyone for your support.

With love the Wilson family

Getting things ready

So they are starting to really get us ready to go home. We are starting to get pharmacy training and they are ordering the bi pap and O2 and feeding pump that we will use at home so that we can start the training for that and maby be able to use it a couple of days before we go home so that we feels comfortable with it. They are also getting her meds to where they are at more reasonable times so we aren't getting up at all hours of the night giving a bunch of meds. She is looking really good and they are trying to get her off the Verapamil so that we don't have to worry about it and what it likes to cause. Today she has been more awake then she really has been since we moved to the floor. She was awake at like 8:30 this morning to about 2pm and now she is taking a nap and starting to get ready to wake up. It has been really nice being able to have both of us here and staying the night with her we can just do pretty much what we want when we want with her and eat while in her room. So hopefully next week or the following week we will be out of here and over at the Ronald McDonald house and not having people watch over us every time we turn around and she will get to see what home life is really like. i will continue to keep this update.

With love the Wilson family

Doctors

So the doctors can't figure out why she is acting this way. They have decided to stop her feeds for a couple of hours and see if that works but he isn't completely convinced that, that will work. I just wanna know what is going on i can't get her to smile at all she didn't like OT working with her at all they did it still for about a half hour still but they normally can spend an hour or more with her. we will see if this works if not i don't know what they are going to do. I don't want to end up back in the icu but if we have to we have to i guess. shouldn't be anything new we have already been here for a year so what is a few more months right?? We are just so tired and i know she is too but i wanna to make sure that she is ok when we take her home not having issues that would be the goal. I will keep this updated on how it goes.


with love the wilson family

Go Figure

We were down here on the floor for about 6 hrs or so and miss thing decides to drop her heart rate down to 62 for about 4 mins and then me and mike went outside for like 5 mins after we of course talked to the doctors and she was fine and we come back up and they are all in here again and she is doing it again dropped it to 58 she did kinda come up from that into the 60s they did a ekg and had the fellow Rob from cicu come down and check her out too we almost ended up in the cicu again!!! after just getting out but she pulled her self out of it and they decided that it is from one of her meds called verapamil and that, that is a side affect from that med so since this is the second time this has happend they are cutting the dose in half and seeing if that helps so we will see she has done it twice since then but for a second litterally so they beleive she will not do it again tonight and so far so good. well just thought i would post this before i forget have a good night everyone.

with love the wilson family

More then you could ask for

Today we moved to the floor today for the first time in a year. We talked to our transplant doctor and he said that there is a good chance we will be out of the hospital within a week to 2 weeks (thank god)!!! We will see how this step goes they aren't sure yet if she will need to have the bipap when we leave or not we pretty much know that she will need oxegyn when we go home. Once we are out of here we will be staying at the ronald mcdonald house for a month or two depends on how she is doing. we shall see how it goes i just can't beleive we have come this far in 2 months this is the best that could have ever happend to us. THanks again everyone for your support and prayers.

with love the wilson family