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

We got the pathology report back this evening and it is indeed scar tissue! They have started taking him off meds and lowering his O2 today to get ready for the vent coming out in the morning. Now we are praying that he will be able to handle that and that his vocal cord is working now. He did kick his left leg tonight when they tried putting his foot support on. So we know he can at least move that. I will try to update more as things happen.

Christian is doing better today his stats are staying at least above 90. They took him off on of the sedation meds to see if waking him up a bit will help. He is awake now watching some cartoons and when he sees something he likes he makes me look with him. He does look good today but they arent sure if he will get off the vent on monday it all depends on how he handles everything.
On the other hand we are missing Carter wishing we could give him hugs and kisses.
We also met another family from NY with the same tumor as Christian among talking they have alot in common his name is Johnny please keep him and his family in ur prayers while they are here.
Today is a better day for us seeing Christian awake and somewhat himself. He still isn moving his arm or leg so hopefully in time that will change as well. Thanks for all the prayers I believe they are working!

Update

This morning was not a good one Christians O2 levels kept dropping and they did not know why he sounded good, looked good, They gave him some medicine to help him pee so that if there was fluid it would help that to. They turned him up to 100 % and have started going down now he is at 50 on the O2.
It was very scary to be there and watch as the nurse looked worried. We are praying that things will start moving in the right direction.

Update

Christian is now on the breathing machine around 11am today he was having a hard time doing it on his own. We are not sure when they will try to take him off again they have given him high dose of steroids to help with the swelling so maybe that will help him out a little. We can not wait for him to recover from this and to hear what exactly it was. Thanks for all the prayers

Post-Surgery

Christian is now in the ICU recovering from surgery. The surgery went well and all of the tissue in question was removed. The reason I say tissue is because the Surgeon believes that what he removed was scar tissue possibly caused by a previous surgery or radiation. Hopefully Christian will be moved to a regular room by Wednesday, depending on how well he recovers in the ICU. The current concerns are his breathing and some mobility issues on his left side. Thank you to everyone for your continued prayers. We will continue to update the site as we learn more and get a chance on a computer.