Sunday, April 10, 2011

The night before last Skyler developed a fever of a 100.4.  A fever in a cancer patient isnt taken lightly so the protocol is if Skyler stayed above 100.3 for over an hour he needs to go to the ER, or if he has a one time temp of 101 or above.  Skyler stayed at 100.4 for only 45 mins and then slowly started to go down.  I was so relieved and just thought that it was a fluke or something, but no the next day he got up to 102 so off to the ER we went.  They drew cultures and gave him an IV antibiotic, Rocephin.  His counts came back and his white count had almost doubled and his ANC was 12.0!  The high end of normal for an ANC is 8.0 so I really didnt believe it when they told me (it was right though) weird.  They told me that his body was responding appropriately though to whatever is going on.  His hematocrit came back really low so he was in need of a blood transfusion.  I wasnt surprised, he has been looking really pale lately so I was expecting this.  They told me I could wait and get it done in the ER (no thank you) or wait until the next day and get in done in ICS.  Of course I chose ICS.  The less time spent in the ER the better, and also the less someone from the ER touches his line the better.  No one there knows how to work his line because they dont see dialysis catheters very often so I usually have to teach them.  Its very frustrating.  That night Skyler's temp got close to 103 but I just gave him Tylenol knowing that we would be going back up to the hospital soon anyway.  So when we woke up we got admitted to ICS for some much needed blood.  Thank you donors!!  They cultured his line again, gave him blood, and another dose of Rocephin and were sent home.  He still had a fever but we were told there wasnt much more they could do without knowing what was going on.  We just had to wait for the cultures to come back.  The doc said to call in the morning if he still had a fever, if he did then they wanted him back up there for more antibiotics and cultures.  During the night he got up to 102.7 and was still feverish when he woke up, so back up to the hospital we went today.  They cultured his line again and gave another dose of Rocephin.  The cultures so far have not grown anything.  Thank goodness!  But today his white count went up even higher to 18 and his ANC is now 15.6.  They are both so high, so obviously he has some kind of infection.  His platelet count also dropped from over 300 to 88 in two days.  Thats the lowest it has been for awhile.  Im worried that his body is getting resistant to the anitfungal medication I give him every night.  It has happened before in the PICU and we had to change the medication.  I hope this is not the case because having his fungal infection become active again is a scary thought.  To say Im worried right now is an understatement.  I just cannot deal with another bad infection and long stay again.  I dont know how I got through 4 1/2 straight months there, these two days have been hard.  Poor little guy, I feel so bad for him.  He deserves to feel good for a change.  I wish with everything in me that this had happened to me instead of my little boy.  Its hard watching him have to go through all this and feel so yucky all the time and know that there is nothing I can do to make it better.

The plan for tonight is more Tylenol if needed and if he is still having fevers then tomorrow we will go up to clinic and hopefully Dr. Lemons will be there.  Please pray this isnt anything bad and that his body will fight off whatever is going on.



11 comments:

suzie said...

I check you and skylers blog everyday. And when I saw yest that u said he was admitted to ICS I immediately called the az temple prayer roll and put his name on. We are praying, praying, praying earnestly for your little skyler! I just can not believe how much he's had to endure, and continue to. You are eachother's whole hearts and its a beautiful thing to see. I hope and pray the results will be okay.
*suzie

Crystal and Skyler said...
This comment has been removed by the author.
Ara said...

I will be sending positive thoughts your way. I hope this isn't a long battle again for Skyler & that his body can fight off whatever the infection is.

Emily M. said...

I've never left a comment before but I've been reading your blog for about 5 months now. I truly admire you and Skyler, you are both in my prayers!

Alyson said...

Name on in the San Diego temple too. We are friends is cami carvers and were vacationing there. Our prayers are with you.

nsudburyfam said...

Crystal -

There aren't any words that can take away your worry, but I want you to know that you are not alone. We think of you every day and we are so close if you ever need anything! I hope Skyler starts feeling well soon.

jaimie said...

Skyler and you are in my prayers

Anonymous said...

Sending you and skyler prayers,, hang in there, you are both so tough and brave

zachs mom

Anonymous said...

I hope Skyler is feeling better soon. He looked like he was feeling pretty punky in the one picture. I'm sure the RBCs helped him perk up a bit. Hopefully the cultures won't grow anything and his fever will just resolve with the Rocephen.

My little guy is inpatient right now too. Had some 102, 103 temps and a pos blood culture for Staph Aureus. We're getting the IV Vanco and hoping for all negative cultures from here on out. He's feeling better I think and I hope your little Skyler will soon as well. :)
-Krin and Mathias
http://www.cargingbridge.org/visit/mathiasthorpe

Todd Sorensen said...

YOU HAVE Angles all around him and you at all times.
Just when you think you have given everything. You have just need to look at that little face.
You are his world and He is yours.. How could you not keep going. That cyrcle for love with the two of you. My prayers for you both is that God will help you and Skyler or ever there and for never ending.. Hugs are being sent to you both and I wil pray for you and Sky For ever..

cjmom said...

And more prayers here. My students ask how he is doing everyday.