Monday, August 1, 2011

Everyday since Skylers fevers have returned they have been getting higher and higher.  I have called the on call oncologist everynight about them and they told me that if he started acting sick or looking different then bring him to the ER.  Usually if a cancer child has a fever above 38.3 then they know to automatically bring them to the ER.  In Skylers case since he is so different than an average child of his diagnosis and since these fevers have been going on for so long they basically let my use my own judgement on when to take him in or not or to just to dose him with Tylenol at home.  To me he hasnt looked "sick" but the past couple of days he has been throwing up constantly and his fever got high last night so I gave him Tylenol to help him through the night and then took him into clinic today.  The doc just flat out told me that Skyler has every single one of the doctors there baffled.  They just dont know whats going on with him.  They have tested him for everything imaginable and everything keeps coming back negative.  Today they drew some cultures again to see if anything is growing in his line and gave him a dose of Rocephin, which is a broad spectrum antibiotic just to cover him incase anything is growing.  They also drew some labs checking for any kind of fungus that could be active again.   His ANC and white count have come up so they didnt admit him, but tomorrow we are scheduled to be admitted to start another round of HD MTX.  He is also scheduled to be sedated for a lumbar puncture as well as the ABR test (the hearing test and to be fitted for his hearing aids)  However, his platelets were still low today, so if they drop anymore by tomorrow then they will cancel everything and give him another week for his bone marrow to recover.  At this point Im feeling overwhelmed and confused.  I have this uneasy feeling that something is just not right.  I really hope Im wrong about this.  I just wish I could get a clear cut answer and then a plan to make it better.

7 comments:

Eisha said...

:-(

Shaylynn;) said...

Bless all of your hearts, and his little body... so sorry.

susi and adam said...

Oh Crystal I'm so sad that you have to keep struggling with all of this. I'm sure I would not come close to managing all of this with the strength and stamina you have. Poor Skyler... I can't think of another little boy that has my admiration right now more than he does. My heart is with you guys and I am remembering you guys in my prayers daily. I don't believe God has forgotten about you. It's just so hard to see through all of this right now.... Hang in there. Much love from our little corner and hope that tomorrow is a much better day!!

kate said...

Oh poor Skyler. I will keep you guys in my prayers.
Hang in there

Anonymous said...

Crystal, I have followed your blog for a while now and I'm in awe of your strength. I pray that the doctors can find what is wrong with your precious boy Skyler and get him well. Take care

Becky Cooper
Plano, TX

Thomps Fam said...

Oh Sky, I love him. I hope someone can get some inspiration about what is going on and that he can get feeling better. Good luck to you as well! Skyler is sure lucky to have you as a mother, and you him. As always, we're praying for you guys!

nsudburyfam said...

I hate the 'not knowing'

I'm sorry you are having to go through all of that. I hope his counts recover quickly so you guys can get to maintenance.