Not any time soon

so we are not going to be getting out today because they want to continue to watch her for the next couple of days or so her bnp is up from 280 to 330 which measures heart failure and what i found online is that over 300 is mild heart failure but Dr law doesn't think that is it even though we have no reason for alot of what is going on she has no infections or anything hopefully they are going to be doing an echo at some point and we will see what that shows. she is running another fever of 38.4 which is just great we will see what they decide now i think there is a chance of rejection we pulled cultures and everything yesterday morning and nothing was there. on a good note she brought her on red blood cells up on her own from 34 to 37 that is great and means we don't need the epo shot or anything. any who i know i am complaining but it just doesn't always seem like they are doing anything even though i know they are. i will keep everyone updated as i know something.


With love the Wilson family

Back in the hospital

Well we are back in the hospital because for two days Shayla was puking and breathing harder and was dropping her o2 so we brought her into the ED last night and Dr. Law decided to admit her for at least 24hrs well this morning she decided to run a fever of 39.2 roughly about 102 F they drew cultures from her and got an IV in one poke for once and so far nothing has came from any of the cultures and were still here this sucks i wanna take my baby home again we were having such a great time she is learning so much and is just acting like a normal baby she even knows how to tense her stomach muscles so that the echo tech can't keep the probe on her. hopefully tomorrow after rounds they will let us go home with her again we shall see. We still don't know when we get to go home yet but hopefully soon we are able to take her out in public now we just got told that one our last weeks visit to the Dr's. we will see what Dr Law says tomorrow about that because we also wanna take her out to my aunts for Easter Sunday we went out and bought her, her first Easter dress. It was nice being here to see everyone that we missed and see Karlee and josh we haven't stopped in to see Victoria yet but Karlee hopefully gets to go home Wednesday which is great and hopefully josh gets to go home or at least Ron don soon too it will be nice having other heart moms and babies at the house so that we will get to go visit someone without having to worry about them being sick or something just cause you know that they are in the same situation as you. anyways that is all for now i will let everyone know when we get out hopefully tomorrow keep your fingers crossed .


with love the Wilson family

R.I.P Daniel March 11th 2008 - March 17th 2009

On tuesday March 17th we lost a heart baby his name is Daniel he was a very special baby and touched alot of lives and still does even though he is gone. Daniel has made two parents very happy in his short time on this earth and made them stronger people and will continue. Daniel was like a second child to me watching him grow over the last year i will never forget him and shayla when she grows up will know who he was. I know daniel is in a better place now and is watching over all the heart babies out there and making sure they are okay.

Daniel

You will forever be in our thoughts and prayers you are a stong little boy no matter what has happened to you, you have always pulled through we just have to except that it was your time to go even though your life was short lived you taught us alot and we will never forget that. Even though i didn't always go and see you i still thought about you and talked about you to shayla. The morning that this started i think she was trying to tell me that something was wrong but i just didn't know what it was i know now what that was and i am sorry. You make sure that tell all the ones we have lost over the last year that we love them and miss them as well and keep an eye on sabrina and be good to her. I love you daniel even though you weren't my child.

Love Jamie Wilson

Life outside the hospital

It has been a busy week we went to the ER monday night because she was really fussy and was breathing really hard they didn't do anything in the ER except xrays and gave her an extra dose of her diaretic so tuesday we went to our echo and i had called to get her into clinic cause the fussyness continued so while we were waiting for the clinic I noticed that her right leg was swollen and she wasn't moving it at all so when we got back to see dr law i told him about it and we isolated it to where it was and it is a big bruise in her muscle from bleeding of course from her shots and and now we just have to wait for it to heal she is in alot of pain from that so hopefully soon it will be gone her echo is continueing to look good were not having to change alot of things which is good. I can't wait tell some of our fellow heart babies get to come over to the ron don and join us it will be nice. anyways that is all for this week but it is even more busy next we have orthopediatics next week along with pt/ot and our echo blood and drs.


with love the wilson family

Home

As of saturday evening we are out of the hospital for the first time in 13 months she did great yesterday and last night she has been kinda poopy today going back and forth between being mad and happy and sleepy but she has done this many times we did talk to dr law about her heart rate cause it was the same issues we have been having for the last couple of weeks it just had been better since we started her on abuteral and he says that she is fine we go in tomorrow to get her blood drawn just to hopefully have it back by wednesday not too long after we see dr law and she has ot/pt tomorrow and her echo and then we are done for the day. so we will see what happens through the night and go from there if she seems to be having too many issues i guess we will be talking to dr law tonight too. i will keep everyone poseted as we go along.

with love the wilson family

Heart babys

Another child (not sure if it was a baby) was transplanted yesterday morning i don't know who it was though for those that will ask also another heart baby is moving to the floor today but we aren't sure who it is i know it isn't joshua or daniel that only leave karlee and victoria last i heard victoria was on the ventilator still so not sure on that one. As soon as we figure it out we will let everyone know.

Our meds

This isn't even all our meds

Well we get to act like we are at home now we get to basically do what we want just not fully leave the hospital but hey close enough we do all her meds now and we have an appointment at 8am tomorrow and of course it has to be the time that she gets like all her meds nice! We will get through this though hopefully by the time we go home some will eventually be gone. she is doing good all in all normal baby stuff now. that is all i have to report on her. Daniel is going to be trialed off the ecmo again so lets pray for the best and that he can get off this time. also some friends are back that we know they lost their daughter this last june and they recently had a premi son but he has been growing great he just got RSV and ended up on the ventilator they say that the RSV is just in his head and that his lungs are healthy. so please pray for him as well as daniel.

With love the Wilson family

Our day is finally close

Shayla is doing good she is still fussy off and on but part of that is just baby stuff and you can tell. They just did our last echo as in patient and yesterday they took the xrays that ortho wanted of her spine and they will have our meds here today. we have been using our equipment since yesterday and she did really good with it we are to be discharged Saturday they pull her line out Thursday. The only reason we aren't being discharged tomorrow is that the Ronald McDonald house is doing a power outage on Friday for 14-16 hrs at night and our stuff has to be able to be plugged in and she has to be on her bi pap for at least 8hrs at night then Friday the 13Th we have to go and stay in a hotel and move over all of our equipment from the house to the hotel and back. We are just so happy that we finally get to get out of here first time in 13 months which is just the time we spent in Seattle children's hospital hopefully in 2 months we will be able to go back home i can't wait i haven't seen home in soo long i forgot what it looks like. I am so sorry to here about Gracie it is kinda hard to swallow since it could have been any of our babies. My heart goes out to her family and friends.

Daniel is doing good they have trialed him off ecmo a couple of times but it hasn't worked so far hopefully in a few more days they are going to try again and hopefully he will make it off this time he is more awake now then he was and is not in bad rejection anymore they say he still has some rejection just not as bad. please keep praying for Daniel.

with love the Wilson family