FEVER.... Again?

Back already??  This will make our 4th admission in 2 1/2 weeks.  On Friday, Lilly had chemo for the first time at clinic. Which went surprisingly well. We finished up there after 2 1/2 hrs. Which is great compared to all previous hospital visits.  We went home and things were fairly normal. Lilly was tired but that's expected after chemo.  When Lilly went to bed around 12:30am her temp was 99.6, nothing quite worth worrying..... Yet.  Then Tiffany woke up with Lilly at 2:45 to take her potty. When she climbed back in bed she decided to check her temp again.... It was 101.9, which means it's straight to the ER to get antibiotics and admitted.

Love the Mowhawk!!! ...two thumbs way up

With Lilly having a low immune system or (her ANC counts are low) they take us right to a room where they quickly access her port in her chest with a 22 gauge 3/4" power straw. Shortly after, they begin giving her antibiotics.  This time however the RN was having a hard time getting the port accessed to draw blood.  After a little trial and error she called another RN to help.  She ended up having to insert the needle (straw for Lilly's sake) a little deeper.  After that she was running great. 

After waiting for our room to be ready and visits from the ED docs, we were wheeled up to the 4th floor.  Their main concern with fevers is bacteria so they run cultures with her blood upon arrival and pump her body full of antibiotics. Now if a fever is no longer present she can possibly go home after 24-48 hrs if cultures are negative.  However, this time her fever did not break so easily.  As a matter of fact it would only go down if they gave her Tylenol and after it wore off it would spike back up.  The highest it ever go to was 102.2.  One thing we as parents have been informed not to use at home is Tylenol or any fever reducer.  They don't want us to hide any chance of there being a fever that would stop us from coming into the hospital. So, after a full day of ups an downs with fever and us being concerned we learned that she'd stay here at least 24 hrs after her fever breaks with no Tylenol in her system.  

Play legos for hours on end.  We built soms neat things.

We were getting worried when Lilly's fever wouldn't break without the Tylenol. Tiffany was especially worried when I asked what the worst possible complications would be with a bacteria - which would require the port to be removed and let the site heal and try again.  Lilly's fever finally broke on Sunday around 3:30 pm which gave us hope that things would get better and she could go home on Monday if it would hold out.  That evening things were still looking good with no fever so I went home to sleep and go into work on Monday.  Monday morning Tiffany called me to inform me of a DNA test done on her blood from Saturday which showed an infection.  Since the DNA testing is such a new method they were unsure how to react with the info given since it does not specify a bacteria type, just that there is one.  So they were waiting for the cultures to grow the bacteria which eventually was identified as pseudomonas.  Tiffany later informed me while at lunch that the doctors determined it would be best if they removed her portocath in her chest since this type of bacteria likes to cling to plastic surfaces and can get really bad.

My Lovely Lilly still shines through, in spite of all the pain.

What a devastating blow for Lilly, who thought she was going home that day 
since she had no fever.  I unfortunately was not there but, I am glad Primary's has wonderful Child Life Specialists like Hillary to help explain things to her. I know it was hard on Tiffany and that she has been especially strong for Lilly over these last few weeks.  Lilly took the news with some sadness and tears, but surprisingly well.  After Lilly was informed she asked Tiffany what I would surprise her with in the recovery room.  Since I gave her a blanket and heart pillow for her first surgery, she now expects it for all the others.  

Tuesday was a hard day for Lilly since she had to go without food and water for so long.  She was originally scheduled to go in at 1:45pm so she couldn't eat after 3am.  At 10am we were informed that she was bumped back to 5pm, but still meant she couldn't eat anything.  Her doctor asked the OR if they could move her up to an opening closer to 1pm.  We ended up going down at 1:30 and Hillary came with us to help keep her calm.  She was still very apprehensive so Tiffy and her watched Frozen to help her relax.  She was so very brave and did much better than the first time.  Sure it helped to get "Versed" to have her sleep before she entered the OR. 

The surgery went very quickly.  The recovery however, took longer than the actual procedure.  Needless to say I got Lilly a surprise for the recovery room. What can I say, I'm wrapped around her finger.  I got her a new Frozen shirt, beanie, and a friendship heart necklace for her and Emery. She did such a good job and still amazes me with her happy spirits. She did so well and wanted to start eating right away because she was SO hungry.  Little by little she was able to eat food. 

What's not love about this Beautiful girl

So, the next step is to wait a day and then on Thursday place a temporary Picc 
Line in her arm for 2 weeks.  Then in 2 weeks while they have scheduled to do the next bone marrow biopsy, they will place a new portacath in her chest. Hopefully she will have better success at staying healthy.  

Thanks for your continued prayers.