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