Wednesday, July 1, 2009

Little flash back

this picture was taken just a day or two after this event

In about six hours 1 year ago i got a call from the hospital telling me that Shayla was back on the ventilator after being off it for 2 weeks and that she wasn't stabilizing she had, had fevers through out the day and was having a hard time breathing with them but we weren't sure where they were coming from and they had pulled cultures from her several times and nothing grew back from them me and mike headed up to the hospital as soon as we got the call i couldn't breathe at all to go directly to her room so i had sat outside the hospital for a minute and tried to breathe and think semi straight and had a smoke i remember the security guard that was on that night look at me funny and the security guard at the house don as a matter of fact telling me it will be OK. I remember that day like it was yesterday Dr. Beaden came up to us (at this time i had major issues with him) and said "look i know you guys don't like me but we aren't able to get Shayla stable you know her normally she stables right after we put her back on the vent but shes not we are going to have to think about ecmo (life support)" Me and mike wanted to sock him so bad we didn't know what to do we just lost it we went out and called all our family and let them know what was going on and that from the sounds of things they needed to come and see her the only ones that came that was my dad my aunt and my mom that i remember my sister came and went but didn't see her my step mom was there as well for me. Alot of our family just couldn't get flights and if they could they might not have made it in time. I remember them calling us when we were outside and asking me if i wanted to consent over the phone to put her on life support I told them no i will be up there to sign the papers and see her before she went. When we got up there i pretty much layed on top of her telling her that she has to pull through just a little while longer and that she could do it she just has to for me and that i loved her so much and i couldn't loose her and that i would see her after she came back. then her dad said his good byes and that he loved her. they took her back and about and hour and a half later Dr. Beaden came out with a smile on his face and all i could think was you erragent ass whole but he came in sat down and told us that she stabled out that they got her on the table sliced her leg to put in the arterial line and that she purked up i was soo happy and thanked him for what he had done i stayed the night that night and the next day during rounds Shayla woke up and started touching my face for the first time ever since she had been in the hospital and looked at me with eyes telling me that everything was OK i just started crying during rounds but to look at her now with her new heart and all you would never think that any of that had ever happened she is so happy and playful and gibber jabbering and laughing most of the time i think she is just mocking us lol. I know that this is a long and sad story but it is and always will be a part of our life.

This one was taken just a couple of days ago

Thursday, June 25, 2009

UpDate

Shayla is doing soo good she playing alot more and is making lots of noise all the time now it is great. we get to move this weekend to my great granddads property out in Eden which will be nice it is about an acre in a half so lots of space and nice and quiet and we will be out of my moms place and in our own even though it is kinds small it will work for the three of us just fine for now. She is getting better with the O2 she is able to have it out more and kinda keep her O2 up on her own she still drops but most of time she can get it back up on her own. She is so cute and is getting so big and smart i might add she knows how to get attention very much so. once i get some pictures i will post them i know i keep saying that but i will as soon as i have them.

with love the Wilson family

Monday, June 15, 2009

We are home once again

Her gj went great she they started feeding through it Friday and we left Saturday. We will go back in the next 4-6 months to have it replaced for one that is more flush with the skin so hopefully we can just do it with her heart cath in December. she is doing so good she is just progressing so fast it is weird. Dr law keeps telling me how amazed he is with her and where she is right now no one ever thought that she would be as far as she is. once i get some pictures i will post them on here.


with love the Wilson family

Thursday, June 11, 2009

her GJ tube

She got her GJ tube today it went great she is doing really good with it so far for the most part she is really fussy this afternoon but i don't blame her because people wont stop messing with her at all. they say that we should be out of here Saturday and home so we will see how that one goes as long as we are able to start putting feeds through the tube tomorrow everything should be fine so i will know more then. that's really all for now not much else to report with her besides that and she is almost off her ativan for the first time in a year in and a half.


with love the Wilson family

Monday, June 1, 2009

a little update


Shayla is doing great she has learned how to get herself out of her wedge so we now have to use the buckles that they put on them to keep her in she has also learned how to lift her bottom up of the ground and move around the floor some she is also making noises now. We fly back to seattle again next week to have a gj tube placed on the 11th we get in on the 10th and we check her into the hospital. Today she did run a fever so called the doctors and they said that alot of their kids have been running fevers and to just give her tylonal and ride it out unless she starts looking punky and she looks great still the only thing is coughing some but that is it. It has been great being home i am more relaxed then i ever was in seattle. Not much else is going on here we miss everyone there.


With love the Wilson family

Friday, May 15, 2009

We are home!!!!

We got home early this morning 5am mountain time. Shayla did great on the trip here we did have to stop alot to get her out of car seat so that she didn't suffer too much but she has enjoyed being home for the first time in a very long time and in her own room and bed. It is really weird being home though and not at the Ronald McDonald house. We already miss everyone there and can't wait to see everyone we have to come back to Seattle on the 27th of this month and June 10th and we should hopefully get a gj tube at that time cause they finally agreed that it has been enough with her pulling out her feeding tube cause she did it the nite before we left too. she is doing so good and they are so happy with her she is now here on 1 liter of O2 and in Seattle it is only .5 liters. not much else to report except that she is learning how to laugh and it is so cute once i take some more pictures i will post them. We do have to drive to Boise next week to see our doctor there.

With love the Wilson family

Friday, May 8, 2009

Good news and some bad

Today we got told that we get to leave Wednesday but we do have to go see our cardiologist in Boise on Friday this is all saying that she does good over the weekend. Also even though she wasn't getting full fluids over the last week she did manage to keep her electrolytes in tack but she lost weight which isn't good so we moved her tube today back to an ND tube so that she can get her fluids and gain weight like she is suppose to. The other bad news is that she is going through some major withdraws today so we had to go back up on her morphine because it was a huge jump down even though we went down on it Monday and it is now Friday but the ativan one wasn't that big so we are no longer to follow the wein schedule but we are to only go down by .1mg on each every week so that we have a smooth transition home and that the doctors back home don't have to try and trouble shoot what is going on when they don't really know her like the ones here. We have the last visit to doctors here today at least for 2weeks we do still have the sleep study tomorrow but that is it until we go home thank god i do still have to pick up one last prescription there but that is it. My husbands mom is going to fly in hopefully and drive back with me so i don't have to drive alone thank god. I hate driving over the blue mountains i just get to nervous doing it and if it was just the two of us i would just completely freak out let alone driving 12hrs alone so we will be home in time to put her on her bipap and to bed and relax and go to bed myself lol. once again i know i say it all the time thank you everyone for everything especially my dads work down in ocean park they have aloud my dad to put up containers to raise money for us to help us out while we were here also since we are still in need of our own place some friends of his are going to be putting a bake sale thing together there on the beach to help raise money for us to get our own place If any of them read this thank you so much it means alot for everything.


With love the Wilson family