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

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

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

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

It is even sooner

Well Friday before the transplant team left for the day Jason called me and told me that they were getting things set up for us to fly back here on the 22ND for an appt. with them and i asked him what sense did that make if i left on the 20Th to turn around and come back on the 22ND and he told me that we will get to go home even sooner we have our one appt with them on Friday morning and then a sleep study on Saturday so hopefully i should be able to take off a week from today. This all is so weird we spent the last almost 2 years of our life here at this hospital and we finally get to take our baby home in some ways i love it because i have gotten to see my dad alot more then i would have and my aunt and i will miss that alot. along with alot of the friends that we have made here with out everyones support that they gave me when my husband wasn't here and when he was here i don't think that we would have gotten through it. I will miss everyone and will never forget it. Well for the last week almost Shayla has been being fed in her belly for the first time in over a year and she has done great with it so far i can't believe how well she is handling it even with all her meds that she gets. Not much else to report today.

With love the Wilson Family

It's about time

We finally get to go home on May 20Th we are leaving for Idaho it is going to be a long drive ahead of us about 10-12 hrs but we will be home finally after a year and a half i can't wait. They are getting everything set up for us back home we have to most likely still go to Boise once a week to get her blood drawn and then our home health nurse and doctors in twin and come here once a month and pt/OT and her doctor in Boise once a month. it is still going to be really busy even though we are home but at least we are home and have more control over everything and our own space well at least once we get out own house we will. Thank you everyone for everything i don't think i could have made it the last year if i didn't have the support i do have.


with love the Wilson family

We are out of the hospital

So we got out Tuesday so far so good it has been tough doing this alone i get to take a couple of breathers a day but that is it. Shayla is doing really good we have had a couple hard nites but she is also starting to try and talk but it is so funny cause it almost sounds like she is gagging on something even though she isn't but she'll keep trying which is good. not much else to report they are rechecking the cmv we will have that test Monday. We go into clinic on Wednesday and oh yeah we get to go home in a month for the first time in over a year it is great i can't wait to go home it sounds so good and relaxing cause the first couple of days after we get there dad gets to do everything i need a small vacation lol one could only wish. Thank you everyone for everything.

With love the Wilson family

Clinic with the eye doctor

Today we went to clinic to have her eyes looked at and to make sure she didn't have CMV in them which she doesn't. They of course told us what we already knew about her left eye that she is blind in it but we also found out that she is pretty much blind in her right as well she can see blur close to her but that is it and that she will have to read by brail. I have no clue where to start to try and teach her what she needs to know. i am kinda scared just because i don't know or even where to look or who can help me find this. She is still my happy little baby and is doing great so we shall see how it ends up. Thank you for your continuing support.

With love the Wilson family

A sad day

Today shayla's dad went home to idaho and her grandma and cousin so we had to say good bye. It is hard to say goodbye to them cause we love them very much and it is definetly going to be hard being here alone again hopefully soon we will be heading that way too but i don't know when. Shayla was all smiles for them while they were saying goodbye so that was a plus at least it was a good day and not a bad one. If you read this honey i love you and miss you already.

So it is even worse......

Last night we found out that the cmv is even worse it has jumped from 78,000 to 250,000 and she now has a rash from it that covers her body the doctors don't wanna believe that it is from it but nothing else has changed and she has been exposed to anything else. she is continuing to be happy and moving which is good. Today she had a first Dr. Law came in to see her and how everything was going and she rolled from her back to her left side she also did it in front of Dr. B she has been so active and smiley and she is moving her head finally on her own this is just great now we just need to get out of here so that she can continue in the right direction and hopefully go home home soon. On another good note her echos have always been between a 4-6 that is scoring that they do for rejection well Dr. B was happy to tell me that her echos the past 2 have scored a 1 which is great and the new med for pulmonary hypertension and so far it has been improving in her echos which is even greater. Shayla also got to see her grandpa and grandma Elva she hasn't really ever really seen Elva except when she was like 3 months old and her grandpa was when she turned a year and the last time he held her was when she was 3 months old she was so happy and we went out on a 4 hr pass so they didn't have to visit her in the hospital once i get the pictures i will post them of course. thank you everyone for everything and Katie if you want to get together Wednesday that will be great we will most likely still be here.

With love the Wilson family

Not good news

Tonight we found out that her CMV level instead of going down went way up the last one was 20,000 and it has jumped up to 78,000 we even had our nurse call the lab back and double check it and it was really that high right now we don't know what they want to do with it yet they haven't done their midnight rounds yet Dr. B said that he wanted to give her some antibodies today before we even knew this because she hadn't created any towards this infection we think that they wanted to wait tell her level came back to order them so hopefully they will do it now. He says that some people believe that giving the antibodies work and some don't so that pray that this helps little miss Shayla we need to get out of here with her cause this is doing no good for any of us she is just more likely to get sick in here then out. As we find out more i will update my blog.


With love the Wilson family

Happy Easter

Today we took Shayla down to the playroom to have her picture semi taken with the Easter bunny she didn't like her too much and just didn't handle all the noise down there so we had to leave pretty quick. We learned something new today with little miss Shayla when she is on her left side she only needs half a liter of o2 and at points can go with no o2 but if you put her on her back she still needs about 2 liters weird. We are going to talk to doctors tomorrow and see about trying feeds in her belly since miss thing pulled out her tube and right now it is in her stomach. We shall see what they say. everything else seems to be going good and still hopefully getting out Wednesday cross your fingers that we will get out then. Dad is still leaving on Thursday as of right now. We will miss having him here with us but some ways it will be a nice little brake at least if we get to go home not too long after him if not it is going to suck. Well nothing else to report right now.

with love the Wilson family

Joshua

So i heard through the grape vine that joshua should be out by 5pm since they needed to wait tell after 4pm meds before they left!!!! this is just great now all that is left to get out is us which should be next week and then victoria haven't been able to get a chance to talk to her mom to see what is holding them up because they have been on the floor for awhile so hopefully they will be gone soon too.

OMG....

Well yesterday we had a lovely little episode first thing yesterday morning me and mike went outside for 5-10 mins and when we left we had a perfectly happy little girl when we came back in our nurse was in here cause she gave her meds and then when we got further in her o2 was into the 40s next thing we knew our room was fully of people and icu drs and nurses once RT suctioned her a deep one she finally started to come up and slowly but surely she was back to normal. The rest of the day was actually great she was happy all day when she was awake and just doing good. Our nurse that was on during the event actually got to see her smile which is unusual because she doesn't normally smile for them so our night nurse got jealous while we were out to dinner so she sat in here for 45 mins holding Shayla so she could see her smile during that time Shayla had been sitting up on her lap for 30 mins which she doesn't normally do at all it was with help of course. today she has been being a good girl and was happy and awake i had to of course show dr B and Dr law the pics of her happy cause they don't always get to see that out of her i think she is feeling so much better right now we are scheduled to be back out of her next Wednesday and then we go to clinic that Friday we shall see they pull the levels tomorrow and please pray that they are down really low. so we can get out of this place i love our nurses but i want my baby home. I think that is all i have to report so far today.

with love the Wilson family

Another day i guess......

We found out last night that instead of going down her cmv infection count went up from 13000 to 20000 Dr law says that it doesn't mean that it is actually that high because of how they do the test but the guy that is like the lead infectious disease will be notified of the jump in the level and see what he has to say about it. With this jump it means that we will most likely be here for the full 2weeks of treatment instead of our hopes of getting out sooner. Dad will be leaving for home on the 16Th so after that i will be here alone just me and Shayla and hopefully not too much longer. Dr law seems to think we will be here longer then he is keeping anyone else just do to the fact that she was really sick before transplant and we are hoping to get the gj tube in at least before we leave which will be nice. That one is a day by day thing because of her liver she has lots of stomach muscle now and she is actually trying to turn over on to her left side now instead of just her right side which is really good. she is becoming such a smart little cookie. Now Shayla when she is sleeping usually sleeps with her mouth shut yesterday when she was sleeping i found her sleeping with her mouth opened it was soo cute. So of course i took pictures also they had us try this blow by mask to see if that would help her nose since it keeps drying out with the nasal cannula. Hopefully the rest of this week goes better then it has. thank you everyone for your continued support.

With love the wilson family

I am so ready to go

Since we have been back in the hospital we have had nothing but issues with doctors and her medications. We had a big long talk with dr. law yesterday and talked about alot of what has been happening since we got back in. Hopefully everything will get better with them all since we had that talk it has been so so today we found out today that her cmv level has come up more from the 8000 we knew about but that it has also come up to 11000 and it is now 14000 which isn't good so they will check it again on monday to see where it is at then. Other then that Shayla is being Shayla pulling at anything and everything on her face and trying to make noises while holding her breathe. On another note mike will be going home on the 16th to get stuff together for us there and get us out of my moms house and into our own hopefully. We don't know when we get to go home but it doesn't sound like anytime soon from what dr. law said yesterday it sounds like it will be into the summer before we go anywhere. he also said that when he is ready to send us home we will know lol.
Alot of the other heart transplant babies should be getting out hopefully this week our little friend Joshua should be out wednesday or thursday for the first time in almost a year he is just a couple months younger then shayla. Karlee is another one that just got out yesterday after 4 months. The other one that i know is Victoria but i haven't seen her mom yet to see when they are getting out because they were suppose to be already out before we even checked in but something was holding them back. Hopefully things are going good with everyone else out there since no one comments on my blogs :(.

With love the Wilson family

Bad News

Tonight we got told that Shayla is positive for CMV which is fine for most of us but not transplant patients her number is pretty high which really isn't' good so we wont be getting out of the hospital anytime soon they will most likely put her on an iv antibiotic called gincyclovir or back on her valcyte which can be given to her at home which i hope that, that would work but i don't' think that it is an option with how high her number is i don't know how long that will mean we have to stay there i hope it isn't that long we shall see they say that it isn't that bad that the number just shows them that it isn't a false positive and that she will be ok they are calling infectious dease in the morning and having them coming and looking at her to decide the course of action that they wanna take if it is oral we shall get to go home tomorrow?? Other then that Shayla i doing good still puking but hopefully the cmv is causing that i forgot to ask. Her echo today looked the same as it had been so that is always a plus. i don't think that there is anything more to report she is still being her normal self which is always a plus. thanks for all your support and prayers

with love the Wilson family

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

Finally kinda have answers

Well they checked her electrolights today and her sodium was elevated alot and they say that this is what is causing her to be so irratable and fussy and not wanting to be touched and her fevers but i don't see how because it just showed up today and they have been watching her weight go down for the last 4 days and they didn't do anything and said that she was fine and then they decided that this is all caused by her sodium i just think that they didn't know what was fully causing it so this just gave them an out she is doing semi better now they gave her fluid and we are giving her half strength formula and they are replacing what she is loosing in stool that is basically just water her bottum looks so bad from all the diareeha we will hopefully notice the irrability go down tomorrow and everything else looking better we will see if it does i will admit that it is just that but they will need to reup her diaretics and get her back to where she isn't loosing alot of fluid but enough to keep her doing good they are still saying that we should be out next week. It is really weird because Josh also has been having fevers and issues with his sodium his went a little higher then hers but the same thing but with him they stopped his feeds all together i jsut refused to the fullest extent that i could because last time we did it she got major fluid overloaded but josh got worse then she did too he actually ended up on the vent today and had to have 2 chest tubes put back in it was funny when they were next door to each other it always seemd that they went back and forth up there when one had a fever it seemed the other had a fever but now they aren't anywhere close to eachother and they still doing it but they both really need to behave so they both can go home Josh has been here for almost a year so i think him and his mom need to go home. On another note daniel is doing better and is starting to wake up alot more and is warm she isn't sure when they are going to try to take him off the ECMO yet hopefully they will try soon so he can get out of here too he has been here for a year in march. Well that is all that i have for right now oh except Dr. Law thinks that once we get everything back to normal he thinks that shayla will still need the bipap like she was before all this.

with love the wilson family

learning new things

Shayla learned how to scoot her way so she was crooked in bed on her side and on her back she kept doing it all day at one point i thought that she was going to hit her head on the bars of the bed. She is most definitely becoming a normal baby she absolutely refused to take a nap today she did kinda take a 20min one when we went and got dinner but then of course she was awake when we got back and then she was awake tell 11pm and i have been up with her since 7:30 this morning cause she spent the morning puking but we started a new med to hopefully help with that. She did stay off her bi pap today from 8:30 this morning tell 9 tonight she is doing soo good i don't know what to do with her but she isn't liking being picked up at all but i still do it and she calms down after a few minutes she did enjoy her swing today and she was playing with a toy that we had on it. I get to talk to the docs tomorrow and see if we can't go down on her pressure support on her bi pap with just how good she is doing. Oh yeah she also kinda learned how to make a clicking noise with her tongue and she knows how to get from her side to her back and she can almost roll onto her stomach from her side of course. we are still waiting on neuro to come look at her again and go from there though. I don't know anything new on Daniel yet. I do know a family that really needs prayers that their son will go comfortably when he does go and that he isn't in pain his name is Allen and he is 5yrs old and has 7 brain tumors he is a great kid and deserves to go in peace and no pain. You all have given us so much support please pass some prayers to him in his time of need.

With love the Wilson family.

Shayla and Daniel update

Today i came back after not being here for only a day and she has been puking alot but it isn't her normal green colored puke it is a creamy clear white but it isn't formula either we are not sure what exactly it is Dr. Law says that we are just to keep an eye on her just to make sure that she isn't aspirating which i am not really worried about that cause she has been swallowing fine she doesn't seem to cough after she pukes usually before. Also her left eye is swollen now too so who knows what is going on there it might just be the tape tat is over there to hold her ND tube. Shayla has learned some new stuff she now can do raspberries and kinda give her kisses. She is soo cute i just can't believe how much she is learning for how sick she use to be and how much she just has against her she is doing soo good.

Daniel update

Daniel is doing good they are starting to warm him up and heather says that he is starting to kinda wake up but they are going to wait a couple more days to warm him up some more and see if he wakes up more. Heather took up his blanket that he always has when he is in the ICU she also took up his favorite toys that he plays with. She definitely sounded more positive about it yesterday than she had been sounding so we will see what happens over the next week. They also were able to pull Daniel out of rejection and they think that he will only be on the ECMO for another week or so. It is so good that he is doing better and she is sounding so positive compared to a few days ago.


With love the Wilson

We are getting there

shayla is doing good today she is more awake and has had 3 brakes off her bi pap today and has handled them all. during her last brake we gave her a bath and it was an actual bath not a sponge bath and she loved it. I am soo happy that she is doing so much better then the last few days. They say that it will be a couple of weeks before we get to leave because of this infection and they have to wait now to pull out the line tell they are sure the infection is gone and the antibiotics are done. She is getting back to her self and i am extremely happy with that. Not much else is going on with her right now.

Daniel Update

So Daniel's brain is swollen they are not sure what they are doing Heather says that they wont know if there is any brain damage until they start warming him up and if he doesn't wake up then there is and he wakes up there isn't???? She says that he is doing OK otherwise but we will See what happens over the next few days. I did ask her probably every question everyone else is thinking but she doesn't know the answers to them yet.

With love the Wilson family

Little Miss Thing

Shayla is doing ok today her heart rate is doing much better it is finally staying in the 100s rather then the 60s since dr law finally decided to just dc her verapamil and it actually fixed the issue we were having with her heart rate but she did puke three times tonight but at the same point she was awake for a half hour and she wasn't fussing so hopefully tomorrow will be a better day and that she will wake up and be her self again she was doing so good before this infection.

Dr. law today in rounds was sitting there talking about her intestines and her liver and stuff but when i asked what he was talking about and about her liver again he turned to me and was short with me and told me that i needed to be patient i didn't say anything to him at that time but it is like i have been very patient with all of them for the last year but my questions still deserve to be answered and not sit there and talk to the other doctors about her intestines and liver and not even have the curtosy to say it so i can hear it too. This is becoming really hard i will keep doing anything and everything i need to, to get my baby girl home but this day just never seemed like it was going to end i know we weren't really having any issues with her but Daniel has been having major issues and then another kiddo that we know we were told will most likely not make it through the night. We will get through this we always do especially with everyones support.

On another note they did take daniel back for a CT tonight they still don't know when whatever happened to his brain happened and the heather and mark don't know the results yet but at least we know it was done so now we just have to wait for the results. He is at least stable now we will see what happens over the next few days.