This morning Skyler developed a fever of 102. A one time temp of 101 or above is a gauranteed trip to the hospital so early this morning we headed up to clinic. They told us to pack a bag because if his ANC was under 500 then he would be admitted. Since they were only 300 on Wed it was most likely that we were going to be admitted. When we got to clinic they drew cultures and counts and surprisingly his ANC jumped up to 800. Yay! Since he wasnt acting sick and his ANC was ok they sent us home. Usually when someone goes in with a fever they start the antibiotic Rocephin right away as precautionary measures, but since Skyler is on three heavy duty antibiotics already there was no need for it. Rocephin is nothing compared to what he is on. The plan is just to wait and see what his temp does and wait for the cultures to come back. No news is good news in this case so Im hoping I dont get a call this weekend. The last thing Skyler needs right now is a line infection, but since I have to access his line so many times a day that possibility becomes a lot more likely. I try so hard to make sure I do everything right and keep everything as clean as possible, so if the line is infected that would be so devastating for me because it would be my fault.
Here is a picture of his antibiotic syringes. This isnt even a whole weeks worth. They used to come in bags which I hung from an IV pole but since he is hooked up for most of the day an IV pole would be such a hassle to get around with. Luckily there were able to switch us over to a syringe and pump.
This pump has become Skylers constant companion for the past couple of months
Its even his friend during the middle of the night. Hopefully we can start weening him off soon so he doesnt have to be attached to this thing all the time. It would also be nice to see what sleep is like again. I dont end up going to bed until 4 in the morning, thank goodness he sleeps in later. I dont mind too much though because I thinks it awesome that he can still get what he needs and sleep in his own bed.
8 comments:
Wow. I will never complain about hauling a toy or sippy or blanket with my kids again. Okay, I will forget and complain eventually but seeing him with a little machine makes my kids health feel more valuable. We don't know what we've got until its gone. For sure. He is so handsome. Keep fighting big boy! Sooo many people are praying for you!
Livestrong Skyler!
I'm a Brazilian young adult who was recently diagnosed with lupus,an autoimmune disease. It's nothing compared with this awful disease you're fighting with...
And since I'm an atheist I don't pray but I keep you and your Family on my thoughts(btw do you know you have an awesome mommy?? - Congrats Crystal!) and I keep sending a positive vibe to you guys.
Wishing you guys have a great weekend! :)
Have you happened to see if they could hook you up with med balls? My daughter was on IV antibiotics for 1 1/2 yrs (24hrs a day 7 days a week). After a while with a pump I found med balls and it made life much easier. They are pressurized so no pump needed. I am sure that they don't work with everything but if the meds he is on would work with it they are worth the fight!!
Crystal, you are a strong Momma! Izzy was on some antibiotics during treatment for a macrobacteria, we only had to give it to her 3 times a day and it ran for 1/2 each, so it's no where near what Skyler is going through, but it was tough. I hope he doesn't have to deal with it too much longer.
wow... it always amazes me when I read your blog. You make me feel gratitude for the simple things in my life. Thanks for keeping a record of all of your experiences and sharing them with us. It will be such a treasure to you to look back on and appreciate his good health when Skyler is through with all of this. He is such a good sweet boy and you are a true hero to me Crystal. Keep on keepin' on :)
Yea! No hospital. Hope the fever takes a nosedive really soon.
Crystal ,, your doing great... always remember that,, and skyler, I love seeing your beautiful little face... keep fighting little angel.
zachs mom
That's the same pump Erin used. I can relate to all that IV medication. It used to take up all the space in our fridge. I guess it was good because then I'd have to throw out the leftovers more often. :) We used to put the pumps in a mini backpack so she could walk around without feeling all hooked up. I hope things improve for you guys. You really deserve it!
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