we have finally hit 1 yr since transplant

this is shayla after her chest was closed


well technically her 1 yr is tomorrow so i am a day early but we have hit it with no issues the only reasons we have ended up in the hospital is 1 cmv back in march then in june for her gj tube placement and then in september because she got sick but none of it has been the heart directly she hasnt had any signs of rejection since transplant she has been doing awsome she is progressing everyday something new she likes to sit up for with help still of course she babbles alot and is just all around happy i wouldnt trade her for anything she is my special baby i wouldnt know what to do without her she makes me so happy everyday i still remember when we got the call that they got a heart for her i didnt know what to do it was 6 in the morning on the 8th of december and Jason our favorite transplant cordinator called and told us we started calling everyone we knew and telling them that we finally got one after 6 months of waiting maybe a little over but hey we had gone through so much with her and we were starting to think that maybe this is it that it wasnt going to happen when it did we went over to the hospital waiting and waiting tell it came in and it ended up not happening tell 1:30 am on december 9th that was the longest wait ever she got out of surgery about 7:30 in the morning on the 9th anddr cohan had come out and told us that the heart was beating and looked good even though her chest wasnt closed until december 23rd it has been the best and worst year but it happens and we have her and she is the best christmas present we could ever ask for we thank all of our friends and family that stood by us through those hard times and helped us keep our spirits up when things were rough. since it has been a year i think it is time for our family to write a letter to our donor family and thank them for the best gift of all i know they lost the one they love as well but maybe it will help knowing the gift that they gave to us this picture is shayla back in august september she now doesnt have the o2 during the day.

We love you all we love you too especially shayla happy heart birthday

ok its been a long time since i posted last

Well since i have posted last there has been alot of ups and downs but the ups have been great Shayla is really starting to babble alot now along with all of her other lovely noises that started about a month ago also a month ago she got sick and so did i right after we got back from our Seattle visit i got better within two weeks but she never did and then she started running fevers high fevers again but no seizures thank god took her to er that is close to where we live and they are just dummies so we went to Boise and she had a collapsed lung and she had the flu and dr law is convinced that she had the swine flu but he still wants her vaccinated against it. we only spent 4 days in hospital after that issue the day before we were released Shayla was off OXYGEN ALL DAY not just part and since then she really doesn't need it all to often there are still days here in Idaho that she does but not very much it is such a huge change considering we left the hospital with her need 2liters of oxygen she is still on bipap as well but the oxygen she need through there was 6liters and is now 3liters she is doing so great she just isn't the same baby anymore.
Also we have started pt, ot and speech and there is a school here that is going to be starting to work with her too when ever they call back but they therapy part speech believes we can get her to eat by mouth but we have to get her to stop putting her tongue up in the back of her mouth and then pt and ot believes we will get her sitting and walking and crawling that this is just all going to take some time but at least we have a plan and they have hope that this will happen and i believe that it will to.
On an even better note the walls of Shayla's donor heart are finally thinning out which is a really good thing except Dr kemna threatened to take Shayla's oximeter monitor away from me because Shayla's heart is doing so well that when she sleeps her heart rate is only in the 50s sometimes at least that is when she is in a sound sleep but of course i am still not use to it so i call and tell the transplant team about it. But other then me freaking sometimes with it she is doing so well she can roll onto her belly now just not off of it and she hates being on it (one of just a few things for ot/pt). Shayla also finally got a top tooth in so she can definitely bite now leaving indents on mommies fingers let me tell ya it hurts she also has this obsession with scratching doesn't matter where if its your eye you cheek or anything she can get her hands on. her other famous thing is when i put her in bed with me to take a nap or something if my back is facing her she pulls my hair and kicks me now and it is no better facing her cause than she just goes for everything. i am teaching her to hug though and trying to get her to learn to clap her hands and play with toys we did manage to find one toy that she absolutely loves it is a bumble bee by v-tech. This morning we had to get up to see docs and speech and i don't remember what i was doing or telling her but i swear i heard her tell me no and not just the shaking of the head no but the word lol she just cracks me up.

Well November 13Th is Shayla's biopsy of her heart for her 1yr it is a month early but i don't wanna chance not being able to get there in December because usually after Halloween it starts to get bad here sometimes not but i don't wanna take any chance also at that same time she will be getting a button hopefully just the g button not a gj also she will be having a hearing test and she will also be having another sleep study and she will also be having a eeg to see if we can get her off the keppra she has been on for seizures since just after her first birthday. the other good part about this is that after her biopsy we don't go back to Seattle tell January yippee!!!! i cant wait i am so tired of traveling i think it is high time to start making them further apart especially with how well she is doing. we still have the battles with keeping the blood levels straight like right now but that is partially do to the er here where we live don't wanna get into that because it makes me angry. well i don't think that there is much more to report right now but hopefully soon.


with love the wilson family

not so good news

well on Tuesday after just getting back from Seattle Saturday me and Shayla ended up sick basically just with a cold and then Wednesday i got an unexpected call from the transplant team in Seattle telling me that Shayla's cmv test came back that she has 1,000 copies which is their cut off point and that we needed to have blood drawn again today to see where it is at well we wont know the results tell next week but if it does anything like it did last time she got it in the end of march first part of April we will be back in Seattle within the next couple of weeks and she will be admitted to the hospital and put on iv antibiotics. if we get lucky though we will be able to use the oral antibiotic and pray that it works. so far she is not showing any of the signs that she did last time to which we ended up in the hospital we haven't had any puking except one night and that was just a little bit because she coughed really hard so we are going to keep our fingers crossed that this will just go away this time without a hospital stay. on a good note Shayla has been fed through her stomach only for a week now and has been doing great with it even on her bi pap. once we know more on the cmv i will post and let everyone know what is going on. please keep your fingers crossed that we don't end up in Seattle before we are scheduled for just normal check ups.

with love the Wilson family

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