My Mother's Day picture at The Del, i the hallway on our way out. Poor baby

I have been trying to connect to the internet here at Rady’s but it is very, VERY touchy and kicks me off all the time so I haven’t had a chance to update you all! My husband planned the best Mother’s Day for me and planned brunch at the Hotel Del in the Grand Ballroom and then we planned on driving up to my parents house to BBQ and celebrate with my mom. Penelope had different plans. My little love was really cranky Saturday and we had to miss our wonderful Miss Sofia’s 2nd birthday party- sorry Robeson’s. We have a gift for Sofia so we would love to get together! Sunday morning we woke up early and got dressed up to get to brunch and enjoy our time together. On our way to The Del Penelope was trying to fall asleep but sounded really funny, so I instantly start to worry. We got to the hotel, valeted the car and made our way inside. Little Pen decided to start looking around and trying to make eye contact with people to smile so I told myself I was overreacting and calmed down. As soon as we sat down she started shivering and got really pale. I covered her with my cardigan and gave her a bottle because she was reaching for it. Within minutes of getting out plates she went from a normal feeling temperature into a boiling hot baby!

Panic set in. I called the Hem/Onc doctor on call, Dr. Anderson this weekend, and just told him we were bringing her in, straight to the unit, not the ER (or ED as they call it), do not pass go, do not collect two hundred dollars. When we got here they were ready and on it. They took her temperature (it came up 38.8 C which is 102), they drew blood cultures from both lumens on her Hickman, gave her Tylenol, hooked her up to fluids, weighed her and started antibiotics. Her room wasn’t even ready and they did it all in a double room with only one occupant, Nadia. Within minutes of her Tylenol and me laying down with her she was asleep. Just a few minutes later they had her room ready and we moved over here. She was whining and crying in her sleep and only seemed comforted when I was laying with her so I slept with her in the crib. I tried to leave her a couple of time in the night and sleep stretched out on the horribly uncomfortable chair bed but she would cry and cry and I was actually more comfortable in the crib so I stayed there with her.We had our fabulous night nurse Andrea O. who took her temperature every hour. Her fever finally broke around 2:00a, whew.

Very comfy Rady's crib

Her labs showed that her ANC was over 4k so it her fever wasn’t from low counts. They have to wait about 24 hours before the culture grow anything that they can look at under the microscope so this morning Dr. Ahn came in and told us that it was an infection in her lines, which is totally common with Hickmans, and they were gram negative rods. I would tag it for you but I am not sure on how to do it but it just means how the bacteria takes up the gram stain and helps them to decide how to treat the bacteria most effectively. Of course I was worried that it was something we did, like not keeping her dressings or lines clean enough but I was reassured that this wasn’t the case and actually we were doing really well because normally kids come in within the first couple of weeks after their first few chemo rounds F&N, meaning feverall & neutropenic. So we are managing to keep her safe and healthy when her counts are low, go team Buttress!

Penelope has to have 3 negative culture before they will let us go, with antibiotics. Dr. Ahn said by Thursday we will be home because she wants us to have some time at home before having to be admitted on Monday for round four. She is so considerate of our lives it is so nice. This means Thursday they will do all of her pre-admit check up and labs so we will be a direct admit on Monday. Friday we will be free to prepare for next weeks trip. Saturday we have the Celebration of Champions, which I will explain more tomorrow in a post since I am exhausted! Sunday I am having a candle party to make life seem a little bit normal and be able to get together with my some friends, old and new (feel free to come!!) and then back to the drawing board Monday. It’s so hard because for the 5 weeks we were here in the beginning I ate for comfort and gained 15 whopping pounds! I have been trying to get back on track to lose it but sleeping on these chairs is so horrible for my back (I have issues for those who don’t know already) and I have no time for walks or the gym. Such is life.

Playing in the Starlight playroom tonight before bed

Happy Mother’s Day to all the moms. Thank you to all who wished me a wonderful one. Even with all of the drama, it was as it should be and a wonderful reminder of what it is to be a mom. The love affair I have with my ladybug is amazing and I will always be here to be her rock.

P.S. Rhea had her scheduled C-Section today! What a blessing she is to be a surrogate – send her your healing thoughts!