Finally kinda have answers

Well they checked her electrolights today and her sodium was elevated alot and they say that this is what is causing her to be so irratable and fussy and not wanting to be touched and her fevers but i don't see how because it just showed up today and they have been watching her weight go down for the last 4 days and they didn't do anything and said that she was fine and then they decided that this is all caused by her sodium i just think that they didn't know what was fully causing it so this just gave them an out she is doing semi better now they gave her fluid and we are giving her half strength formula and they are replacing what she is loosing in stool that is basically just water her bottum looks so bad from all the diareeha we will hopefully notice the irrability go down tomorrow and everything else looking better we will see if it does i will admit that it is just that but they will need to reup her diaretics and get her back to where she isn't loosing alot of fluid but enough to keep her doing good they are still saying that we should be out next week. It is really weird because Josh also has been having fevers and issues with his sodium his went a little higher then hers but the same thing but with him they stopped his feeds all together i jsut refused to the fullest extent that i could because last time we did it she got major fluid overloaded but josh got worse then she did too he actually ended up on the vent today and had to have 2 chest tubes put back in it was funny when they were next door to each other it always seemd that they went back and forth up there when one had a fever it seemed the other had a fever but now they aren't anywhere close to eachother and they still doing it but they both really need to behave so they both can go home Josh has been here for almost a year so i think him and his mom need to go home. On another note daniel is doing better and is starting to wake up alot more and is warm she isn't sure when they are going to try to take him off the ECMO yet hopefully they will try soon so he can get out of here too he has been here for a year in march. Well that is all that i have for right now oh except Dr. Law thinks that once we get everything back to normal he thinks that shayla will still need the bipap like she was before all this.

with love the wilson family

learning new things

Shayla learned how to scoot her way so she was crooked in bed on her side and on her back she kept doing it all day at one point i thought that she was going to hit her head on the bars of the bed. She is most definitely becoming a normal baby she absolutely refused to take a nap today she did kinda take a 20min one when we went and got dinner but then of course she was awake when we got back and then she was awake tell 11pm and i have been up with her since 7:30 this morning cause she spent the morning puking but we started a new med to hopefully help with that. She did stay off her bi pap today from 8:30 this morning tell 9 tonight she is doing soo good i don't know what to do with her but she isn't liking being picked up at all but i still do it and she calms down after a few minutes she did enjoy her swing today and she was playing with a toy that we had on it. I get to talk to the docs tomorrow and see if we can't go down on her pressure support on her bi pap with just how good she is doing. Oh yeah she also kinda learned how to make a clicking noise with her tongue and she knows how to get from her side to her back and she can almost roll onto her stomach from her side of course. we are still waiting on neuro to come look at her again and go from there though. I don't know anything new on Daniel yet. I do know a family that really needs prayers that their son will go comfortably when he does go and that he isn't in pain his name is Allen and he is 5yrs old and has 7 brain tumors he is a great kid and deserves to go in peace and no pain. You all have given us so much support please pass some prayers to him in his time of need.

With love the Wilson family.

Shayla and Daniel update

Today i came back after not being here for only a day and she has been puking alot but it isn't her normal green colored puke it is a creamy clear white but it isn't formula either we are not sure what exactly it is Dr. Law says that we are just to keep an eye on her just to make sure that she isn't aspirating which i am not really worried about that cause she has been swallowing fine she doesn't seem to cough after she pukes usually before. Also her left eye is swollen now too so who knows what is going on there it might just be the tape tat is over there to hold her ND tube. Shayla has learned some new stuff she now can do raspberries and kinda give her kisses. She is soo cute i just can't believe how much she is learning for how sick she use to be and how much she just has against her she is doing soo good.

Daniel update

Daniel is doing good they are starting to warm him up and heather says that he is starting to kinda wake up but they are going to wait a couple more days to warm him up some more and see if he wakes up more. Heather took up his blanket that he always has when he is in the ICU she also took up his favorite toys that he plays with. She definitely sounded more positive about it yesterday than she had been sounding so we will see what happens over the next week. They also were able to pull Daniel out of rejection and they think that he will only be on the ECMO for another week or so. It is so good that he is doing better and she is sounding so positive compared to a few days ago.


With love the Wilson

We are getting there

shayla is doing good today she is more awake and has had 3 brakes off her bi pap today and has handled them all. during her last brake we gave her a bath and it was an actual bath not a sponge bath and she loved it. I am soo happy that she is doing so much better then the last few days. They say that it will be a couple of weeks before we get to leave because of this infection and they have to wait now to pull out the line tell they are sure the infection is gone and the antibiotics are done. She is getting back to her self and i am extremely happy with that. Not much else is going on with her right now.

Daniel Update

So Daniel's brain is swollen they are not sure what they are doing Heather says that they wont know if there is any brain damage until they start warming him up and if he doesn't wake up then there is and he wakes up there isn't???? She says that he is doing OK otherwise but we will See what happens over the next few days. I did ask her probably every question everyone else is thinking but she doesn't know the answers to them yet.

With love the Wilson family

Little Miss Thing

Shayla is doing ok today her heart rate is doing much better it is finally staying in the 100s rather then the 60s since dr law finally decided to just dc her verapamil and it actually fixed the issue we were having with her heart rate but she did puke three times tonight but at the same point she was awake for a half hour and she wasn't fussing so hopefully tomorrow will be a better day and that she will wake up and be her self again she was doing so good before this infection.

Dr. law today in rounds was sitting there talking about her intestines and her liver and stuff but when i asked what he was talking about and about her liver again he turned to me and was short with me and told me that i needed to be patient i didn't say anything to him at that time but it is like i have been very patient with all of them for the last year but my questions still deserve to be answered and not sit there and talk to the other doctors about her intestines and liver and not even have the curtosy to say it so i can hear it too. This is becoming really hard i will keep doing anything and everything i need to, to get my baby girl home but this day just never seemed like it was going to end i know we weren't really having any issues with her but Daniel has been having major issues and then another kiddo that we know we were told will most likely not make it through the night. We will get through this we always do especially with everyones support.

On another note they did take daniel back for a CT tonight they still don't know when whatever happened to his brain happened and the heather and mark don't know the results yet but at least we know it was done so now we just have to wait for the results. He is at least stable now we will see what happens over the next few days.

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

A Bad Day

We were suppose to go to the floor today but someone decided to take her off her bi pap this morning they say that it was because she wouldn't sleep with it on which we haven't had any issues with that and then she started running a fever it was only 101.4 but it has gone up to 103 and we can't seem to get it to go down I had them give her extra morphine and she was calmer for awhile but now she is kinda pissy again but when ever she has a fever she wont stop moving so it never seems to get better we have tried ice and the morphine and the tyonal and nothing is working they are now going to try to put the nasal cannula on and see if that works at all cause she isn't having breathing issues she is just puking and the fever and pooping like every diaper. we will see what happens. i just want out of here it has been a long hard road and i just want it to get better she needs it and i need it. thank you everyone for your support.

with love the Wilson family

Addiction

Today they lowered Shayla's morphine she has been on morphine and ativan for a year and they have lowered it twice in 4 days which is alot for someone who is addicted to something they told me that they were going to take it slow and that it would take a few months to get her off of it but they aren't going slow at all which is making me mad so i get to tell them that they get to re up the dose cause she doesn't need to go through the withdraws like this she has been through enough. On another note we should be meeting with the charge nurse from the floor tomorrow and talk about what i expect from them and stuff like that so we will see what happens with that so she should be moved into a floor bed on Sunday or so and then moved to the floor on Monday we will see what happens on Monday and go from there i hope we get to the floor and stay there and then go home.

with love the Wilson family

our walk

We got to walk shayla around the icu for the first time in a year she loved it all the nurses were soo happy to see her some where else then her room it was great. even though we didn't get to walk very far it was still nice cause we got told that we had to stay around the cicu part of the icu do to alot of infectious kids up here right now. hopefully they will continue to let us when we get on the floor it is just going to be harder because of diffrent nurses that don't know her. We will see how this ends up.

another day of them being no help

Today the decided that shayla isn't getting her g tube monday that her liver is too big still due to the fact that her old heart was so bad and it is going to take awhile for her liver to go down so now who knows how long before we get the g tube they seem to think that we will get it before we go home but we all know how promising that is. the lung doctor came in and looked at her and was very pleased with how she looks and how she is doing she actually smiled at him just cause she doesn't know him. so now they are telling us that we should be out on the by tuesday cause she actually meets the requirements to be down there they just want to make sure that everyone down there gets to know her very well since she is a very complicated child. Other then that shayla is doing great they are keeping her off the bi pap as long as she is awake even though she is sleeping in my lap right now but hey i am mom and she is fine so they can bite me today. well thank you everyone for your support.

with love the wilson family

A good day

Shayla is continuing to progress she is up to three 3 hr brakes a day. She definitely knows when she wants that bi pap off of course if she had it her way she would just take everything off her face but she can't do that yet. today they did an upper GI on her just to look at her stomach and make sure that there is no scaring down that way do to her chest tubes that she has had in the past and the fact that her liver is big. Her liver has also started to shrink it isn't a huge difference but enough for me to be able to tell. They say the plan is still to get her g tube in on Monday through Ir cause that is where Dr law wants it done because he likes how they do them. The doctors are going to continue to discuss this through tomorrow just to make sure they are doing the right thing for her because they don't want to set us back with how good she is doing if after the g tube gets in she is still doing as good as she is right now we should be on the floor next week if not beginning of the following. They are also thinking that there is a chance that she will still need the bi pap when we go home so we will have to set everything up back home just on the off chance that we do need that she also might also need to be on oxygen when we go home as well allot of this is because of her scoliosis her left lung is restricted but oxygen and the bi pap at night is a whole lot better the a tube down her throat. Being here over this last year has been the worst thing ever but in some ways the best thing we have met a lot of great people like our friends Leah and her son Joshua and if this would have never happened we would have never had a chance to meet them or Mimi and her daughter Mia and Maddie and her mom Katie and even heather and her son Daniel all these people are heart moms and it is nice to have their support along the way because we always have are family there but in allot of ways it is hard for them to know exactly what we go through on a daily basis because they are not here like we are every day no matter what, yeah we take a day or something to do laundry and maby go shopping or something like that but you know that isn't a brake. once we go home i am really going to miss everyone that we met which there is plenty of them but in allot of ways i will be so relieved being home and able to get back to a semi normal life again with Shayla and her dad and just get to be a family. we will of course still have a nurse that comes in but she wont be in all the time and she will only be there for like an hour and yeah we will have doctor appointments up the ying yang but you know what I would take that over being stuck in a hospital. Thank you everyone for your support we really do appreciate it even if it doesn't always seem like it.

with love the Wilson family

Little update on what is going on

Well today shayla wanted to be a burger and dropped her heart rate down to the 50s twice they say that it is just because of one of her medications so they are cutting back on the dose and not giving her, her dose tonight. As of yesterday for the first year shayla has no iv medications or anything else going through her hickman this is definetly a first but it feels good just to be able to pick her up with out that mess plus everything else she still hooked up to monitors and feeds and of course her o2. Also at some point hopefully next week we will get her g tube put in which is a more permanent tube that they can put in instead of the one that is going down her nose now and it will be easier to give her meds and everything with the g tube there is just a couple of test that they thought they had gotten done that they hadn't yet so they want to get those down asap tomorrow they goiong to move her feeding tube back to her stomach and she how she handles that. they are also going to do an upper GI and if she pukes alot with the food being in her stomach then they are also going to do what they call a ph test to see how much acid splashes up and there is a possiblity that they will do a band around the top of her belly to stop it from happening or they will do GJ tube and that just bipasses the stomach. Well that is about it on what is going on with her.

another day

Today shayla got to get into her walker for the very first time. She is getting alot better and happy again it is a big change. she is doing soo good it is just alot diffrent then it has been in the last year just how much she is doing now and how much better she is getting before it just seemed like a never ending circle and now we are actually going somewhere for once. hopefully soon we will get out to the floor and then get out of the hospital. Shaylas dad is going to be going home in the next week or so I will be by myself again which shouldn't be too bad since we will be actually going home too but it is going to be hard we will have appointments day in and day out working with OT and blood draws and doctors i will be exhausted and i bet she will be as well. We will still have to deal with her morphine and ativan she will be on a very slow wean from that do to the fact that she has been on it for the last year so we will be going home on that as well.