shayla now and then

Shayla august 29th 09 you wouldn't believe that this is the same child from 2 years ago well almost she turns 2 in 2 months it is just so hard to believe how much she has changed and how much she has grown her doctors are so pleased with her we went up to the ICU and got to see one of her nurses and when she saw Shayla she almost cried Shayla is now feeding full time through her g portion of her tube which means that in November we should be able to just get the g button and not have to have the j part Shayla is also only on bipap now as needed and has dropped down to only needing .5 liters O2 during the day and 1 liter at night she is amazing she also now has a fascination with licking things and you but it is rather funny to watch cause she will even just sit there and lick her legs. we miss you all very much but we are still happy to be home we are back in seattle the 12th through the 15th next month.

with love the Wilson family
shayla earlier in august

shayla on the 4th of july with her great grandma

the first day that we were back in idaho since jan of 08
shayla back in hospital for what they call cmv

shayla out of the hospital with us and sleeping with daddy
shayla not too long before we got out of hospital for he first time since dec. 07- march 09
shayla when she finally came off ventalator after transplant for the first time in a very long time
when shayla was finally able to be awake after she was transplanted
2 weeks after heart transplant in 12/09/08

just after she had gotten so sick in november that we were off the transplant list for 1 week
This is after we put her on the transplant list obviously around halloween before she got really sick in november
This is just after she crashed in march of 08 when we figured out we weren't going anywhere any time soon
This one is when we thought we were going to bring her home in march of 08
this is shayla either just after her surgery in january of 08 or just before
This is the shayla that i took to seattle in january of 08

an over due update

Well i know i haven't been very good at keeping this up to date like i should since we have been home and alot has changed Shayla is doing great she is growing into a little girl right before our eyes. she now gibber gabbers alot and the feet are almost always to her mouth she trys to pull her self up into a sitting position. We are finally going to be starting physical therapy and speech when we get back from Seattle next week. We just got done spending the week with my family and mikes family so Shayla got spoiled all around. It is hard to believe that it is coming up on a year since Shayla was transplanted we have our year biopsy in November it is a month early but want to have it done before winter hits. Shayla has started feeding into her stomach and it is going great she even handles her medication in there as well we were afraid that she was going to puke it up but she didn't she is also getting better about not needing her Oxygen as much as she use too when she is on it at night she likes to pull it out to where it is no where near her nose and she doesn't desat without it unless she is in a very deep sleep. Oh yeah we had a hearing test done a week ago and guess what Shayla hears great and everything in her ears nose and throat looks good. we were so happy to hear that considering they did question it for awhile there. we still have to have another eye test because i don't believe that she is blind at all she watches me walk around too much. well nothing much else to report besides we are all doing great. We miss all of you in Seattle but we are still happy to be home.

with love the Wilson family

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

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

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

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

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