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.

FEVER :(

2-18-14 FEVER... The dreaded word. The word nobody wants to hear... Jay went back to work. I was hoping I could hold the fort down. My mom and Jay's mom came over to help where they could. Lilly wasn't feeling well. I could tell something was off. It's that 'mom instinct'. I took her temperature. 100.7 I called the clinic. They said to watch her for an hour and call us back. It kept fluctuating but stayed right around 100. Up and down, up and down. I was getting nervous. I tried calling the clinic back, but I kept getting the run around. I was getting frustrated. They finally called me back and decided since Lilly was so new into the "induction phase" of her chemotherapy, that she needed to come in. But, since it was so late in the day she had to go through the Emergency Room instead of come up to clinic. I was upset because if they would have called me back when they were supposed to, I could have gone to the clinic. Oh well. It's over. I can't dwell on it. When you have a child that has a compromised immune system and you have to go through the ER, you call ahead and pre-register so they don't have to stay in that awful waiting area with all the other sick kiddos. Jay's mom took me and Lilly up to Primary's. My mom stayed with Emery. Lilly was scared. I was scared. We called Jay and he left work to meet us there. They accessed Lilly's port for the first time which was a hard thing for her. But, she's a trooper. She did great. They immediately started her on an antibiotic - no questions asked. They don't even wait for any tests to come back. When leukemia patients have a fever you try and get antibiotics in them within the first hour they are at the hospital. Then, they gave a second antibiotic. And a third. And then we were told a room would be ready for us soon up on the fourth floor. Wait.... What? I didn't know we were being admitted!! Lilly was upset to have to stay in the hospital again. So were we. But, our cute friend Michalla found out we were back in the hospital (from facebook) and drew a picture and wrote a letter for Miss Lilly. She had a nurse run it down to us. That was so so sweet of her. It made Lilly happy, if only for a small moment. 

Lilly was quarantined to her room, but Michalla came and drew on her door! She knows how to write and draw backwards so Lilly could read it on the other side. This made Lilly smile! She thought this was so much fun!!

Michalla and Lilly took turns drawing this picture together. I love it! Please keep Michalla in your prayers too. She has a long road ahead of her too. She is one of our angels and we care about her so so much!!

2-20-14 Since we were already in the hospital for a few days, Lilly's doctors decided to move up our chemo day and spinal tap so we wouldn't have to turn around and come back. That was nice of them. I was nervous for Lilly to have her spinal tap. It was hard on her the first time, but I think it was from her bone marrow biopsy that was hard. This time, we go to the RTU (Rapid Treatment Unit) instead of the operating room. She's not intubated, (no tube down her throat) but there is still an anesthesiologist with her the whole time while she's sleeping. We were able to go into the exam room with her while they put her to sleep. Lilly and I sat on the bed. I held her tight. They gave her some medicine and she immediately went limp. That was a little scary. They sent us out of the room and came and got us when she was in recovery. During the spinal tap, they check her fluid and also give her chemotherapy in her spinal fluid. She did amazing. She was super hungry when she woke up. She ate a bag of cheetos, a bag of chips, and a slushee. Those steroids finally started to kick in and she's eating like a teenage boy. It's crazy to see because she normally eats like a bird. But, it's only for a couple weeks and then she's off the steroids. We got released to go HOME! It's so nice to be home. But, we had to go home with IV antibiotics. I didn't know when you become a parent with a child that has cancer, you also become a nurse too. Scary! Good thing we have Gordon around. Jay's brother-in-law is a Life Flight Nurse and he has helped us so much. Stressful... So stressful.

Our Social Worker Kristen brought by some hats for us to try on when she heard we were back in the hospital. We decided we liked this one the best. Isn't she beautiful?

Heading down to the RTU for her spinal tap and chemo. Mom gets to ride in the wheelchair with Lilly. It makes it a tiny bit easier for her.

Child Life Specialist Hilary is with us keeping us preoccupied while we wait to talk to the anesthesiologist.

I had to stay preoccupied while Lilly was asleep having her procedure done. Sara Bear had a rip in her leg so that kept me busy. I needed it. I was an emotional mess!

Right after Lilly woke up she was so HAPPY! And she was so HUNGRY! She ate a bag of cheetos, a bag of chips, and a slushee! I love this girl so much!!!!!