Back at Childrens

Sunday night at 11pm our sweet baby Kyler started vomiting....well, like I always do when he seems outof sorts, I checked his temp. It was high for him but not fever yet so I continued checking it and by 11:15pm he had thrown up several times and his fever was 100.7 so we brought him into childrens. By the time we got here his temp was already 102.8 and they did cultures which had already grown by 2am. He had a gram negative (not sure exactly what yet bc results arent complete) infection in his line and blood. They started him on 3 very strong antibiotics and yesterday (monday) they did surgery and pulled the line. He now has IV's in both feet and one in his arm. He has had constant high temps and has been a miserable little boy up until a few hours ago. His heart rate was super high the first night but it had went down by last night. The nurse and I sponge bathed him and changed all of his bedding and then I finally got to hold him for the first time since sunday night (which I slept with him all night sunday night both in his bed and on my cot. He wouldnt even lay down that night unless he could atleast touch my hand or something) ...after his bath and everything he sat on my lap and we went to the window and I opened it so he could see out. Then he fell asleep on me and when he woke up he smiled and said hey momma...and then said dadda and looked around like he was looking for his daddy. That is the first time he has talked (other than when he has cried for his mommy when they are doing stuff to him which breaks my heart bc I cant make it just go away) since sunday and he even smiled and giggled a little.HOPEFULLY things are headed up from here on out. As always, he has been so strong. Please keep him in your prayers.

Day+101

Quick update. Most things are going great with Kyler. However he has a rash on his back chest stomach and legs that they thought was GVHD. Well, the one on his back is infected with staph and possibly also has a viral infection in it (the rash). We will be finding out the final results on thursday and if it is viral we will be admitted to the hospital for strong antibiotics. Right now he is home with strong antibiotics.
Other than that he is doing great! He is still working on walking and is doing great pulling up and attempting to walk. We are so proud of him. He is so happy and sweet.
Not much else health wise has changed. He does have 317K platelets now which is GREAT!! We are super excited about that. Well, I will try to update when I find out any more results. Please keep him in your prayers.

Day +89

Well I havent been able to update in a while. Things have been busy with the move to our new house, Kylers doc appts etc. This is going to have to be a quick one too. So far things are going well. Kyler does have stage 1 GVHD of the skin but everything else is great. He LOVES pediasure so his nutrition levels are good and his counts are great. Platelets were 290K at the last appt. Right now we are treating his GVHD with cream and an extra immune suppresant. Hopefully this will help. We want to avoid steroids etc if at all possible.
He is getting so big. He is starting to try to walk on his own and is learning so many new things. He is still super cute :) He is so funny and sweet and Im so glad to see him happy and able to play on the floor without me stressing. Platelets and an immune system are amazing :) Well Now that we are home I can finally include pics. There are so many from the hospital I would LOVE to post but that would take a really long time so I think I will just post a new one. Thank you all for your prayers and thoughts, and please keep parying for him...He isnt out of the woods yet but so far we are on the right track.

Day +73 Still home:)

So very quick update.We have officially been home for a week now. Things are good so far. Kys appetite is increasing some with the help of an appetite stimulant. He may have Cdif again we are still waiting on the results but everything else seems to be going good :) He is already down to only having to go to clinic twice a week which is great. I just hope things continue to look up and he continues to do so well. There are a few things we are watching but Ill get into that more if it becomes a problem. We are LOVING being home. He has slept so much better had less sinus issues and just had so much more fun :)
In other news we will be moving into our new house next wknd and are super excited. :) Kyler went to it today and LOVED it :)
Well thats my quick update just wanted to let everyone know that for the time being things are calm and good for Ky. Please pray in continues to stay that way :)

day +66 WE ARE GOING HOME!!!!!

I am up at 5am updating and hopefully will soon be getting ready TO GO HOME!! WHOOHOOOO!! :) We are suppose to get to go home some time this morning if everything goes well and as planned. WE are ALL THREE super excited! Cant wait for Ky-man to see the outside world again :) Please pray he continues to do well..No GREAT once we get home :) We were told and we know to expect atleast one readmission but we are hoping he surprises us all and does wonderful and never has to stay another night here.He's definately had his share of hospital stays and he been a trooper through it all. Hes such a strong little boy and we are so proud of him. Please keep him in your prayers :)

In other news...Gene Chizik (Auburns coach) came to see him thursday and took pics with him and us. It was SUPER exciting! He and his wife are VERY sweet/ great people. This last week has been one of the best weeks here. Hope it only gets better once we go home. :)

Day +63 Things are looking GREAT!!

Okay, so I am going to start this blog by listing some AWESOME facts:
1.) Kyler is eating and drinking on his own w/o the feeding tube (this past saturday he decided to throw it up and has had a much better appetite since:) )
2.) Kyler is on ALL oral meds and is doing AMAZING with all of them EVEN the Cyclosporin which they warned us he may either, not take, or throw up. he drinks it like its juice :)
3.) Kylers counts are AWESOME!!! Platelets are 187K and white blood cells were 9K
4.) We MAY be going home soon if he continues to eat/drink and get enough nutrition on his own.
5.) His sinuses are MUCH better :)

Now, How it all came about because is it a very interesting story :)
Kyler had his TP feeding tube (which goes deeper than a NG tube) placed two tuesdays ago. Well by the end of the day he had thrown up so much that we just knew it was NG again. Long story short they managed to get his feeds up to 40ml/hour after two weeks. This past weekend he was very nauseated and was throwing up a lot. The tube then proceeded to get clogged up. They had an xray done to see what position it was in and to our amazement/ shock it was STILL TP!!! That was on saturday during the day. Well, Saturday night Kyler threw up FOUR times which was a lot more than he had been recently. I got up with him to do my routing diaper change around 2am and he started vomitting for the fifth time. Well, as we always do I was holding the tube and having to push it back into his nose every time he would gag/vomit...I looked down and here the tube comes OUT OF HIS MOUTH!! I called the nurse and in the meantime I pulled the tube completely out through his nose. As soon as the tube was out he was SUPER thirsty and drank 3/4 of a caprisun. The next day he had a small appetite and by monday of this week he was eating/ drinking like a little piggy compared to what he had been doing. Coty and I and the doctors were SUPER exicted!! He has done so welland as mentioned before yesterday he was put on ALL oral meds other than his antibiotic.
Now, about going home. WE MIGHT be going home earlier than originally suggested or it could still be next week. We have to do several things to go home. We have to make sure his oral cyclosporin levels are good,make sure he is getting enough calories/fluids and do several "check out" things such as tutoring about at home care (even though we had been doing most of it before all of this) ordering certain things (like his ID bracelet which super-mommy (me) has already ordered LOL ) and we have to make payment arrangements etc. Other than that we are one foot out the door and let me tell you...I truelly believe the day we leave Kyler will miraculously start walking/ running to the car LOL I know he is JUST as ready if not more to get out of this room as we are.We are so proud of him. He has done amazing through everything!! He is my little trooper!
With that said...just some extra "notes"....He Is Not out of the woods yet. For the next 6 months or even a year ANYTHING can happen.Even though his WBC's are great he Does NOT have all of his lymphocytes back yet which are his viral fighting WBC's. He is on an anti-viral that he will go home with but that wont completely block out viruses. We really dont want that sweet baby to be back here after everything hes been through so as much as we want everyone to see/ love on him we are asking that everyone remember his health comes first and he is not 100% yet, so we will still be as careful, well actually more so than we were pre-transplant. It isnt anything personal...but our little Kyler monkey is the most important thing in the world to us and we wont let anything jeopardize his health and everything hes been through. Once everything is almost back normal we would LOVE for everyone to come see him love on him etc. We will be letting people see him, we will just be VERY particular about colds/viruses other children etc,and we will let people know when we feel he is ready for visitors.We want him to get settled and make sure going home doesnt reverse all of the good things weve , well actually HE has accomplished. Thank you all for your prayers and encouraging comments through all of this. Love you all!

Day +52 Still at Childrens

Well, We are still here. We Were going to be going home this week but they found the cause of Kylers sinus issues. He has a very rare, odd bacterial"Bug" that takes 6 months to a year of treatment to kill. Well, I.D came up and said they want him on 6 WEEKS of I.V antibiotics. Since he has already been on three that means we need to stay here for 3 more weeks. The good news is that it is NOT contagious and the even better news is that as long as we are treating it and not letting it go crazy then it is not dangerous for him. He now has a TP tube and is doing very well with feeds through it but the meds still make him a little nauseated. The meds are getting better too though. Atleast we have 3 more weeks now to maybe get him eating so that we dont have to go home with the tube. Other than that all of his medical stuff is the same. He is producing platelets now ON HIS OWN!! WHOOHOO :) His platelet count today was 101K and he hasnt had a transfusion in 2 weeks! YAY!!! That was a big plus :)So far everything else is going good. He has had a lOT of diarrhea due to the fact that his stomach is "learning" how to work again so that has made his bottom extremely sore even with ointment so now he hates getting his diaper changed. He does, however,LOVE his baths again and he showed it by giving me a bath tonight with him LOL It was so GREAT to see him splashing around and playing in the tub again that I just sat there and let him soak me and I loved every minute of it bc he was sooo happy!
He is doing really well with his walking. We still have to hold his hands but he is getting braver and tried to let go and the other day he stood all by himself for about 20 seconds. It wont be too long before hes walking..wait RUNNING LOL out the door :) He gets excited when they let him out of the room and he always tries to escape if he can. hes TOO funny! He is also saying a lot of new words and has all kind of cute new things he does. I still cant believe he is 1...My baby is growing up sooo fast! Gosh I love him so!! Well, we are going to bed..I just wanted to do a quick update while he is sleeping. We've been having so much fun now that he gets to get off of the pump for 12 hours and can actually walk around and play without having lines hanging off of him, and I have completely forgotten to update. please keep him in your prayers and HOPEFULLY we will be home in around 3 weeks! :)