Brylee had a very long week this past week. It all started with her last day of radiation! We were celebrating and getting ready to come back home to our house in Price. That's when the fever of 102 hit on Tuesday night around 9PM. I called the on-call oncologist and they said to immediately take her to the ER. So off we went. (I was smart this time and packed a few days worth of stuff in a duffel bag.) When we got to the ER I told them who we were and why we were there. The doctor had already pre-registered us. So they took us back to one of the triage rooms. They put us in the isolation one because she has cancer and has a higher chance of getting germs and infections. We were then taken to a room where they drew some labs to try and figure out what was causing the fever. They then put us on some precautionary antibiotics to get a jump start on whatever bug she has. We were in the ER for what felt like an eternity when the ER doctor finally came in and told me her blood counts were extremely low. Her platelet count was 17! A normal person is 100-150! They said that once we got up to the cancer floor (ICS) they would most likely give her some platelets and watch her fever for a few days. We then were taken up to ICS. We got there around 3AM. Brylee and I tucked into bed and fell asleep. An hour later at 4AM I woke up because I felt Brylee moving a lot. When I opened my eyes there was 20 people starring at me! The doctor proceeded to tell me (as they were running the bed containing Brylee and I in it down the hall) that Brylee had a rare reaction to one of the antibiotics and that her blood pressure had crashed. She told me that they were giving her lots and lots of fluids to try and keep her blood pressure up and that they were taking us to the Pediatric Intensive Care Unit (PICU). The EMT in me asked what her blood pressure was at. When the doctor told me that it was 50 over 20 I about peed my pants! I didn't really have any concerned emotions though because I was still in the waking up fog from having only an hours worth of sleep. When we finally got to the PICU they gave her a special med that forced her blood pressure back up. We were in the PICU from 4AM Wednesday morning till Friday afternoon. While we were in the PICU they kept her on the antibiotics and slowly weened her off her blood pressure med. There was only one time that she started to drop again and they bumped the dose back up. We were in the PICU for her first transfusion of platelets ever in her entire life.
Now let me explain the platelet transfusion because I have had many people ask me what the difference is between that and a blood transfusion. Platelets are part of the blood. The lab separates them from the rest of the blood for people like Brylee who might need just platelets and not red and white blood cells as well. Platelets are a weird yellow color (they reminded me of nasty snot). They also started her on a special shot of meds that was suppose to help her blood counts to come up.
On Friday they transferred us back up to ICS. Friday was Brylee's first blood transfusion in her entire life. Despite the platelets on Wednesday and the special shot of meds in her thigh her blood counts continued to drop to scary levels. Her ANC (don't ask me what it stands for because I'm not sure but I know it has to do with her red and white blood cell numbers) was a 0.1. A normal person is 1.5-8.5. So they decided to help her out a little bit and give her a unit of blood. Before the blood she was so pale and exhausted! But within 10 minutes of the blood transfusion she was playing with puzzles and had rosy cheeks! It was incredible to see the change in her little body.
Saturday morning the doctor came in and said that we were going home today and that her platelet count was still dropping and they were going to do one more platelet infusion before we were discharged. They platelets came up to the room at about 2PM. The protocol is for the nurse to stay in your room for the first 15 minutes of the infusion. So while our nurse was in our room while the platelets started she took Brylee's feeding tube out! It was so happy that I was trying to get Brylee to smile and take a picture. All Brylee could do though was grab at her throat. We all thought that she was probably feeling weird that the feeding tube was gone. The nurse left our room after 15 minutes. Right when the nurse left Brylee started throwing a temper tantrum. Cory and I were the awesome parents telling her to knock it off. At the same time Cory and I both stopped and starred at her. I then turned to him and asked if he saw her swelling up too. He said yes and we immediately called the nurse. Within 1 minute I swear the entire hospital was in our room! Brylee had gone into anaphylactic shock. She was so red and swelled up so much she reminded me of the girl from Willy Wonka that turned into a blue berry. It was the scariest thing. I was standing in the corner of the room watching all these nurses and doctors breath for my daughter and pump her full of meds trying to get her back. They finally had to stab an eppy pen into her thigh to get her to come back to normal. They almost took her back to the PICU because the eppy pen was taking so long to effect the anaphylaxis. She finally started to be able to breath again and finally stopped swelling. They kindly told us we were not being discharged anymore and that she was now on a 24 hour watch. They put her on a strict Benadryl regimen to try and keep it from not happening again. Sunday morning came and they told us we could go home. They said her platelet count was still low but they weren't going to risk another infusion.
We came home on IV antibiotics with no reason for her fever and a very hectic week where we almost lost her twice. I'm officially pooped out! But I'm happy to be back in my own home. It was so surreal when we walked in the house though. The calendar was still on March 5th. The second car has a layer of dirt on it. My bamboo is dead. I'm thankful to my sister in-law that my cat and fish are still alive. It feels like we haven't been here in a million years. I'm excited to be home, but I'm scared to death to be so far away from her medical team.