Wednesday, August 31, 2011

As I mentioned in an earlier post Skyler is still having fevers.  The week before we were admitted last they put him back on IV meropenem and for that whole week at home he was fever free.  Once we were admitted they stopped it and low and behold they came back that day.  It has everyone even more confused because obviously the meropenem was treating something but they have no clue what.  Still, every culture they have drawn from his line has come back negative and nothing has shown up on scans.  His fevers are gradually getting more frequent and higher again.  I have talked to numerous oncologists and the Infectious Disease teams that have all worked so closely with Skyler and they all flat out told me they just dont know what is going on with him or where to go from here and they have basically left the decision of what to do next up to me.  Its not a good feeling when the docs throw their hands up in the air and say lets leave the decision up to a mom with no medical background.  Its just not supposed to work that way.  They are supposed to have all the answers and make everything better...ya right I wish.  I have been very much involved with making decisions when it comes to Skylers care but this is different.  One of the options that was thrown around was to do a PET scan because that is basically the only test they havent run on him yet and it will show more than the white cell scan.  They mostly use this to detect tumors but they said it can also be helpful in seeing areas that may light up indicating infection in a certain area on Skyler.  After much debate on this I decided to go ahead with it.  I dont like the idea of him getting more exposure to radiation, but its basically our last option at this point and I want to be able to say that I did everything in my power to find out whats wrong with him.  I hate seeing him suffer everyday from these miserable fevers.  Plus if everything looks ok then I would be a little less worried that there is something big we are missing.  Also I have been worried lately about his lump on his jaw bone because its growing again so I am curious to see if anything lights up in that area.  If you dont remember, a couple months before Skyler was diagnosed with Leukemia he underwent two surgeries to remove a mass on his jaw bone to biopsy.  The first surgery they removed alot of it and with our luck the tech threw away the sample before it got to pathology so they had to repeat the whole surgery because of this mistake.  This time because the mass was intertwined around his nerves and they had removed a big chunk that wasnt as close in the previous surgery, they nicked a nerve causing him to lose function on that side of his mouth.  Within a couple months he regained the use of his lip, but lately he is losing it again.  I think it has started to grow again and is pressing on a nerve.  They called it a lipofibromatosis which is a mass of cells that will just keep growing back.  He never had a follow up appointment on this because he was diagnosed with cancer before we got a chance to go back.

The PET scan was scheduled for today and it was a lot more stressful and complicated than I thought it was going to be.  First of all he had to be sedated for this because it is an hour long and he had to lay completely still.  I know he did his other hour long scan not sedated but this machine is alot noisier and it was more important they he hold completely still.  Second they had to inject him with some sort of molecule (cant remember the name) and let that sit in his body for an hour.  They also had to give him contrast as well which is something I am  not a fan of.  Also they couldnt use his dialysis catheter for this so they had to start an IV in his hand.  He thought he was done with pokes so this was VERY upsetting for him.  And the last thing I wasnt a fan of was since they dont do too many PET scans at PCMC they cant afford to buy one for the hospital, so once a week a trailer (yes I said a trailer) pulls up outside the hospital with the scanner in it.  Ghetto I know, I thought the same thing.  So to say I was completely stressed out, overwhelmed and worried for my son was an understatement.  At the last second I was really second guessing this scan but I felt it needed to be done, if we didnt do this we would always be wondering if it would have given us an answer.

To sedate him they went with a drug they havent used before because it doesnt drop his heart rate like the other one would because he now as what they call a regular irregular heartbeat.  This meaning his heart rate is very irregular because it will speed up and they slow down, but that irregular heartbeat is doing it in a regular pattern if that makes any sense.  These last couple of admissions whenever he was on the monitor at night his heart rate would drop down into the low 30s and then jump up to the high 180s.  They dont know if that was his actual heart rate or just the monitor not picking it up because his heart rate is so different, so the NP today played it safe and went with this new drug.  He did really well with it but half way through he started to wake up a little and cry so they gave him versed as well.  The half life on this new drug is alot longer so I have had a high little man on my hands today.  They wont get the results back for a couple of days so its another waiting game until then.  Right now he is sleeping off the medicine and is starting to spike another fever.  Please pray we can get some answers so Skyler can start feeling better.  Thank you.

 Wiping away his big crocodile tears after getting his IV.  I felt so bad for him because he was so excited to be done with the hard stuff now that he is in maintenance.

This is the stuff that they injected into him.

This is the trailer.  Its not as bad as what I was envisioning in my head when they told me they just pulled up a trailer.

                                                               Putting oxygen on him

I dont like seeing him lay there like that.  I just want to pick him up and cuddle him everytime and tell him everything is going to be ok, but I cant.  I had to leave him in that room all by himself on that little table.  Please let this be the last time I have to do this.  You would think after doing this so much that it would get easier, it doesnt, it gets harder each time.

Getting the scanner ready

This is the tech controlling everything.  You can see all the images on that screen.  Its crazy seeing my son like that.

This is blurry but its because I had to look at him through the glass window because no one could be in there with him.  To make sure he was ok they had to sit and watch that monitor that is attached to him through the window.  And since we were outside they told me they had to notify the ER to let them know what we were doing because if something went wrong they couldnt call a code they would have to rush him into the ER.  That didnt make me feel too great

This video is of Skyler when he was just waking up and wanting a cracker.  He is so drugged up in this video that its hilarious!  Its kinda long but the beginning and ending is so funny



Jill said...

So sorry for you Skyler, you and your family are in our prayers. fingers crossed that they figure the fevers out soon.

Anonymous said...

oh sweet skyler, I am so sorry that your fevers are not going away,, We are praying for you!!


Lisa said...

Prayers for Super Skyler and his brave, wise mommy. A PET scan is hard enough for an adult...can't imagine how difficult for a scared mom watching her precious son. My heart is full for both of you.

Jana said...

You both are on our prayers. Let me know if I can do anything. So sorry Skyler!

Amanda said...

We will be praying that you get the answers you are looking for. Thinking of you guys.
XOXO Amanda anda Millie

Susi said...

Oh Crystal.... I wish I could give you a big hug. Our thoughts and prayers are with you. He is so precious. He has been through so much and so have you. Much love to you guys