Update

So we have been home for a few days now and so far has been crazy with trying to get everything in order and making appointments. Thankfully he is off one of his meds as of today.

We also wanted to say Hi and we miss you our family from Lebonheur in Memphis. And to our new ependy family.

Christian is doing pretty good today he wanted to go shopping :) He wants to eat so hopefully sooner then later he will be able to. We have our appointment for ENT in a few weeks so we will see what they say.

Update

We have been home for a day now and trying to get into this new lifestyle.Hopefully things will be a little easier once he if off one of the medicines it is given four times a day and and the night times are a little tiring. Christian has seemed happier to be home and see Carter. He had sit in his little chair all day yesterday and is in it already this morning.

We are Home

We are home!!!! And so far we are exhausted the nurse came right after we made it in the door and was here forever so we really didnt have to much time to relax. We have been trying to get his equipment together and have found they did not bring everything so im not sure what will happen tonight since its 11pm.

Im and adding a pic from the plane,Christian loved it he had a big smile when it was going up and mommy was holding onto the chair. But it turns out it wasnt all that bad. Going to bed now ill update more later.

Going Home

We are going home today! So im asking for an extra prayer for a safe flight and that we will adjust to being alone with out the nurses! We are all excited about leaving but we will miss everyone here. Ill let you know tonight how things went.

When you are in the hospital you tend to get a little bored so Christian and mommy put these window gels on each other.

Christian with his Tray bear.

And our new extended family.

Help Needed!!!!!!!

We have an offer out there for someone to fly us home but we are waiting to see if they want someone medically inclined to go with us so we are in the need of finding someone that will be willing to do so but it would probably be unofficial for this is a private plane. If its someone that will have to fly back home them selves we are willing to get you a plane ticket back somehow. So if you are willing you let us know on the blog, email or phone call. 716-310-6609. They are saying hopefully Friday will be our day to get out.
Thanks

Update

The infectious disease doctor wants him to get a pic line in today this is something we can go home with. He needs it to get the IV meds he is getting for his infection. We still do not know when we will be leaving Memphis but at least we are working in the direction to do so.

He is a good mood today he is having therapy OT and PT as I am typing this and is doing a pretty good job throwing the balls at the board.

Dr Sanford took off this head bandage this morning and said the area looks good.

Update

Not to much to say but thought I would post about his how happy he seems to be these past few days. He is up in his special chair watching a Barnyard and playing with some animals smiling. We did try his speaking valve this morning and he was trying to say wagon he wanted to go for a ride. So hopefully the more he has it on he will get use to it and be able to talk sooner then later. i do miss hearing that sweet voice of his and the last thing he said to us was i love you mommy right before being wheeled into surgery.
Still no news on when we will get to go home for sure but hopefully it will be sometime next week. I know that when we get home we will have to get use to being home alone with him. So hopefully that first day or so we can relax and spend time with Carter and Christian and just be a family for bit. It is hard being away from the little guy this time around and I know Christian is missing him as well. Have to go for now he needs suctioned again.

Surgery Update

Christian made it through surgery ok he does have an infection but its not in the wound so that was the good news he did put the bone back also. A stitch on the inside came out and that is what caused the infection. He did get a port put in for his meds and that will come out when those are finished. He did however have to get a blood transfussion for his hemoglobin was low. He made it back to the room around 5:30 (memphis time) and has pretty much slept since. He does wake up to make sure we are here with him though. So I guess we will see how the evening goes.

Surgery

He is headed to surgery in just a little while the doctor is going to take his take off part of the bone and clean out the area and decide if he will put the bone back after he is in there and sees what it looks like. He does have an infection the question is now where exactly is it in the actual area where surgery was done or the incision. This will put us here at least another week. Please pray that things will go good and he will heal soon.

Also we just found out that his friend Johnny was admitted here lastnight for an infection and will have surgery as well so please keep both boys in your prayers.

Fevers

Well we have said we may get to come home Thursday but now we may not. Christian has had a few fevers over the past day and half and now some leaking from his incision. We are not sure yet how this effects anything until the doing takes another look at him. We are praying its nothing serious.
On another note our new friend Johnny came back in town Sunday to start his radiation so we are asking that you say an extra prayer for him and his family while they endure this adventure.

We met another family in ICU there baby is 6months old with hear issues so we are asking for prayers for them as well.
Thanks everyone for the prayers.

Update

Christian had a pretty good weekend. We have been cleaning the trach area by ourselves now and are trying to get the hang of it. We will have our last training on Tuesday morning and then in the afternoon have the training on his new equipment for home. So at least we feel like we are getting something accomplished. They are saying that Thursday is our targeted day to leave so we will see. He had his measurements for his new wheelchair or stroller so we will have a way to get him around.
We will update when we know more.

Here is Christian with his new friends Bernard the puppet and Nicholas, and of course what he loves to do take wagon rides!!!

Update

Christian so far has had a good day today, he has been smiling and playing around with us. He had therapy this morning so that wore him out.
We had our cleaning lesson today for the trach it will definitely be a two person job one to hold the trach in place and one to do the actual cleaning/changing. It wasnt to scary but then again we are in the hospital so we had help if would have needed it. They want us to do it his weekend on our own to get use to doing so. Then on Tuesday we will have our final lesson on how to change it out so that should be fun.
Looks like he will be transported home by an ambulance at some point next week. We have to finish our trach training and then do our homecare training for the new equipment. So hopefully things will go as they are planning.

Sorry

For those that have tried to call us yesterday sorry the phone ringer was turned all he way down and so it was not ringing in here. I was trying to turn it down so that it would not wake up christian and looks like I did it to much.

On the other hand he had a good night sleep lastnight. Slept the whole night which was nice for mommy and daddy. We had to suction him when he woke up and that was it.

Update

The past couple of days have went good. We dont have to suction all that much. He got to go for a wagon ride lastnight and he did not want to get out. He also had some PT/OT he got down on the mat and did pretty good for his first time. He will continue to get these while we are here. Hopefully that will help him to recover faster.
We set up a email for Christian for those of you who have trouble posting on here you can email him and he will still get the messages. I do read them to him so he knows who all is thinking about it. christianshowers@yahoo.com

New Room - 5609

Yeah!!!! He is out of ICU as of tonight. His new room is 5609 and his number is 901-287-5609 if anyone would like to call us. Daddy and mommy get to get out for a bit tonight and grandma will sit with him.

These are just a couple of pics that were taken before his surgery and we thought we would share them!

Trach Surgery

He was put back on the vent today to help with resting since he has not slept in 48 hours or so and to get ready for the trach surgery tom. we are not sure what time it is all we know is they are doing it. We are scared about this for it will be alot of work and so on. They keep telling us it wont be as bad after its done but we are just nervous right now. That may be true but it still doesn't change the fact that he is getting one put in.
He is having fluid problems from the surgery the doc came in today and put another stitch to try and help that way and while is in surgery tom. he wants to go and add more if need be. If this does not settle down then he may end up with a shunt as well. So as you can see this has not been the best week for Christian or us. We are mentally, emotionally and physically exhausted.They say that if things go well he should be in a regular floor by monday of next week.

Johnny Sileno

Our new friends the Silenos had a bump in the road on Wednesday and decided to stay in town for observation with concerns about Johnnys head so please keep him and his family in your prayers.

Prayers Needed

He saw the ENT doc this afternoon he let us look into it as well so we could see what he was seeing. He strongly feels that he should get the trach on Friday, he said it could temporary. So we are asking for all the prayers that he will get better before then and not have to go through yet another surgery. Thanks!

They took him off the vent yesterday morning and he did ok all day and through out the night. He is suppose to see the ENT docs today to see if his cord is working or not. They keep bringing up trach so we are praying that it does not go that way.

link

Here is a link about Christians doctors and nurse (which we love) if you wanna take a look!

http://www.commercialappeal.com/mca/local/article/0,2845,MCA_25340_5509153,00.html