Sunday, April 17, 2011

Nothing has grown yet from the biopsy.  The Infectious Disease doctor says that the nodules are little abscesses filled with puss.  If nothing has grown tomorrow they will send the sample to the University of Washington where they are experts in testing the DNA of the bacteria.  Hopefully they will be able to identify exactly what this is. 
I havent mentioned this before but for the past couple of weeks Skylers moods have changed dramatically.  He isnt the happy, calm, sweet boy that I know right now.  He has been VERY angry and yells and hits all the time now.  I havent seen him laugh much either which he normally does all the time.  I thought at first that he just wasnt feeling well, but it has continued on for at least a couple of weeks now 24-7.  He will switch back to his sweet self and tell me he is sorry for being mean and that he still loves me but then he will switch back to being angry really fast.  I am actually very concerned that something is going on.  This change happened very suddenly and its SO different from how he normally is.  He will be going down for a CT scan of his brain tomorrow to see if that can tell us more.  The child phsycologist is going to evaluate him tomorrow also to see if he thinks this is medical or behavioral.  Please pray that nothing is wrong with his brain.
Also he has a pneumothorax (air in his lungs) so he is requiring more oxygen at night now.  Instead of the blow by we put him on a nasal cannula last night.  Im praying this oxygen issue will correct itself soon.  I hate the fact that he needs oxygen, I have gotten used to seeing him with no tubes on his face.  He was so sad that he had to have another tube in his nose, but once we got it on and he could actually breathe it didnt bother him at all.  He was so good at putting it right back where it should be when it fell out.  It looks like we will be staying here longer than I had hoped.
For some good news, Skyler was able to go and walk out in the halls last night.  He was in pain but still wanted to try.  He did great and didnt even want to hold my hand.  The nurses were blown away because most of them have never seen him walk.  This was his first time walking in the halls all by himself.  That first week he was diagnosed I think he walked out in the halls once but had to have help because he was so sick.  It made my day seeing him do this.  Good job Skyler!


10 comments:

Susi said...

oh my goodness. I wish there was more that i could do but I will continue to pray for you and especially Skyler. My heart just aches for you. May God and angels give you strength. Much love ! Susanne Creer

Anonymous said...

Skyler is such a brave sweet boy! I have a son about the same age as Skyler and he goes through rotten stages sometimes (usually they last a few weeks or even longer) where he is a total mean grouch and not his usual sweet, obedient self. Sometimes I start to think, "What is wrong with my child?!", but then he goes back to his happy self. I know in your situation you immediately think of something affecting his brain, but maybe it's normal childhood mood swings that are starting to kick in. That's what we'll hope for at least! He's been through so much too, it probably feels good to him to vent his emotions a little. Just a thought. I continue to pray for you both!

Erin said...

There is no holding him back now that he's re-learned how to walk! Way to get back at it Skyler!

His mood swings sound similar to the ones we see when Nolan is on Dex. Definitely not nice day in and out. We will pray for a clear CT scan tomorrow, and continue praying for good news from the lung biopsy.

Erin & Nolan

jaimie said...

Good luck Skyler. Take care Crystal.

Briana said...

Crystal, after I got back down to our room tonight, I mentioned to Eric and Elena that I saw you and Skyler and Elena said, "I want to go see Skyler!" :) Sometime, we'll have to get all these kiddos together. I am happy to hear that it isn't looking like it's fungal, but that is so frustrating that you don't have any answers yet! It is so hard to sit around and know something's wrong, but not have answers and know what to do about it (as you well know!). We pray for you guys so much! Thanks for the updates - you and Skyler are constantly in our thoughts.

suzie said...

Praying, praying, praying, praying, praying and praying some more for your little skyler!!! Holding onto faith and knowing that his hand is in all things and hoping for the very best! Man oh man.......skyler shouldn't have to be put through this again, just breaks my heart...can't imagine how ur feeling!!! You guys need a break more than anyone I know!
Lots of admiration,
*suzie

lindsay Roscoe said...

I hate this!! Skyler keep on walking dude!! We love you both and will always be praying for you both!!

Anonymous said...

Skyler continues to amaze me every time I see you guys in the hospital and each time I read your blog. He is so strong and he just keeps fighting every challenge that he is being given. I will continue to pray for you and Skyler.

Amy said...

Steroids made my son have horrible mood swings. He would eat more eggs than an adult, and be mad one second, then happy the next...it was like he was bipolar or something. I'll bet you are seeing the steroid mood swings:( It's great to see Skyler up and walking though! We are praying that they can figure out what is going on so you can get out of there and back into his cool new bed!:)

Anonymous said...

Is he in Delayed Intensification right now? The Dex makes my son who is normally very sweet and loving so angry and moody. He lashes out and has major mood swings. He never hit or kicked me until he started taking Dex. It's rough but I will pray that that is what is going on with Skyler and not something with his brain.