This feels like the longest week ever. I know it could be so much worse but I needed to journal my thoughts. Quick recap.
Monday went pretty well so I ended up going to coach cheer on Monday night while family entertained. She ended up fevering and crying for me. That's how you know when she doesn't feel well. It was a long night... not to mention the beeps, vitals, labs drawn and constant noise. Sleep was not happening for me. Not to mention she wanted me to sleep in the bed with her.
Tuesday... she woke up fever free but very whiny. Labs were not fabulous.. ANC 0! I couldn't believe it. Dr. Marsden came to talk to us and Taleah wouldn't even look at him. She made me cover her face and started crying. That is NOT like her. I started crying because I knew she was not right. I ended up going to work and my mom and Tavia entertained. I was calmed with pictures from them doing ballet and having a "party" in the room. Tuesday night was supposed to be Hairspray at Tuacahn with my family. Obviously, we couldn't go and I was pretty bummed about it. I ended up staying the night with her again. I was dreading the night and almost felt anxious like I did when night rolled around with a newborn baby. I was anxious to get out of there. I was praying for the morning because at this point her cultures were negative and she had been fever free for 24 hours.
The news came and we were able to go home even though her ANC was under 100. That can be dangerous so we were told to stay home and limit visitors. We were excited to pick Slade up (who had been staying with the Stevensons) and go home.
We came home and ate lunch together. Slade was a little whiny and we were all ready for naps. Slade felt warm so I took his temp and it read 101.5. GREAT! That is the last thing I wanted. I was nervous for Taleah's safety AND I couldn't help but think it was similar to what happened to Taleah. (with the fever 3 weeks prior- Roseola virus). Taleah's temp was going from 99-100 and I knew if it went past 101 we were heading back in to the hospital. During nap time, my famliy had stopped by because we were supposed to head to Vegas for the Celine Dion show. I have been DREAMING of going for a LONG time. Taleah screamed when I said I was leaving. Last minute.. I decided not to go and I was devastated. Yes, I cried again. I ended up calling Marsden's office (crying) and explaining the situation with Slade. In the meantime, Dani Prince had told me to have them nose swab kids because that was what finally came back positive for Chase a few months prior.
gI ended up taking Slade in to be looked at and do the swab. We figured if his was positive for one of the viruses that was a good indication that Taleah had it too. We ended up drawing his labs because I couldn't shake the thought of cancer. Poor Nurse Heather and Marsden... had to listen to this crying mom.
As we were waiting to draw labs, Scott called informing me of Taleah's fever that had reached 101.3. Yay, back to the hospital we went. Blah!
When I had to tell Taleah, she was heart broken to have to go back. We had only been home for 4 hours. They decided to do the swab on her as well and PRAYING that it would come back positive so that the new fever wasn't something more serious. The swab was traumatic. The first sample fell on the ground so she did it twice. She still asks me if she has to do that again.
I felt terrible as a mom because Slade was sick and I couldn't take care of him. I had no idea if they had the same thing. Scott's parents took Slade again and we stayed as a family that night. We tired to make the best of it and keep her happy. Keeping a 3 yr old enertained ALL day in the hospital is a chore. Good thing we always have help!
Thursday morning we would hear the results of the nose swab. IF she was fever free and the cultures stayed negative AND the swab was positive then we could go home. However, it would be strict rules... limited visitors, antibiotics through her port every 8 hrs until ANC reached 750, labs every few days, no chemo pills and watch her closely.
When I heard positive for para influenza 3 I was SO happy. Sounds crazy right!?
She was so happy to hear she could go home!!! I was still nervous about her low numbers but I felt like I could keep her safer at home.
They wanted us to keep Slade separated from Taleah so my mom kept him while I had Taleah. Slade was still fevering and not feeling well. His cough wasn't as bad as Taleah's but still there.
Thursday night was long because Taleah woke up a lot coughing pretty bad. Slade had a terrible night with my mom and trouble breathing. Ended up with croup so we took him in on Friday. Yep, another visit to the doctors office. I couldn't believe it. They gave him an oral steroid and sent us on our way. We kept them apart for almost another day. I can't even express how horrible I felt that I couldn't be there for both my kids. Terrible feeling.
She really handled it all so well. She only lost it a few times. I think I cried more than she did. She is such a tough girly and I am so lucky to be her mommy!
She really handled it all so well. She only lost it a few times. I think I cried more than she did. She is such a tough girly and I am so lucky to be her mommy!
Again, I know that things could be SO much worse. Things have been ok since we have been home. It's hard when there was a jam packed weekend of family events going on that we will have to miss out on. BUT at least we are home and getting better.
We are waiting for the results of her labs that were just drawn to see if she has come up at all. I really hope so. I want to get her feeling better and back on her chemo. Things will get better. I am hoping we will laugh about it soon... but I am not quite ready to laugh yet! :)
I'm sorry, that's tough. Having both your kids sick and not being able to snuggle both of them, what a bummer. I'm praying for you and your kids. Lifting you up!
ReplyDeleteI hope her numbers go back up soon! Being away from your kid when you know they need you is really hard. Hopefully her counts will stay up for a looooong time after she recovers.
ReplyDeleteI don't get here nearly enough to stay updated on her blog, but when I do get a chance to come by, I am in awe of the strength your family has. I know when moments like this hit and you feel like the worst parent ever, it doesn't really ease any pain, but you truly are an inspiration! Stay strong and get feeling better Taleah! We need that sparkling personality back in full force!
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