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.