
05/30/2025
***Ainsley update***
05/30/2025
It’s been a week! I can’t believe my last update was eight days ago. I’m happy to report that Ainsley finally seems to be on the right track.
Last Friday, Ainsley was transferred from “the floor” to ICU. The floor nurses were having trouble managing both Ainsley and their other patient(s), as she was requiring one-to-one attention. (Several nurses told me that they were only able to check on their other patient three times during their 12 hour shift. That’s not good for the other patient!) Depending on level of criticalness (I don’t think that’s a word), she could be 1:1 in ICU.
During rounds that Friday morning, the surgeon said it was quite possible that Ainsley would need to go to Interventional Radiology so that a drain could be placed in her abdomen to remove the fluid. If that wasn’t possible because of multiple pockets, he would need to take her to the OR for a “wash out”, basically irrigating her abdomen and cleaning out the infection. She had a CT scan on Friday (thanks to me and Chad both advocating that a CT scan would be fast, less traumatic, and less painful than two one-hour ultrasounds). The CT scan showed multiple pockets of fluid as well as infection.
Saturday morning, the surgeon took Ainsley into the OR for the wash out. When she came back to her room, she had a wound vac attached to the incision, as well as a drain in her abdomen. She was extremely uncomfortable and requested medication countless times.
Chad and I had planned to trade places on Saturday so that I could go home and see Bigs, along with Penny and Cookie. However, with the surgery, I wanted to stay bedside to comfort Ainsley. (There’s just no one like Mama during those times.) On Sunday, Chad and I DID trade places. We met in Federal Way so we could swap cars. I knew the girls were with Chad, but he surprised me by bringing Penny along, too. I had not seen HER in 16 days, and she was a sight for very, very sore eyes.
Since it was Memorial weekend, Chad had been camping at the river lot with the girls. One of the first things they asked me when we met was, “Can we go back to the river lot?” Oookaaayyyyy. 🙂 So to the river lot we went, where we all got to visit with friends and relax.
I think it was about 4:30 pm when I got there, and Mimi and Poppa immediately jumped out of their chairs and met me at the car. It was wonderful to see them, as it had also been 16 days. Two of our wonderful friends had considered going home earlier in the day, but they stayed on the off chance that I would visit. I’m so glad they did; it was a relief to be with friends after such a long and wild hospital stay.
The girls and I went home that night and slept in the “big bed” together. I actually slept for almost 12 hours—they played quietly in their tablets and ate snacks in the morning while I continued resting. It was absolutely glorious! No alarms, no nurses, no IV team, no medications, no crying…. It was much needed.
On Monday, Chad and I traded places again. Before that, though, I was able to take Bigs to Nonna’s house where we visited with her and Zio (Italian for “uncle”). I hadn’t seen my mom in about 2.5 weeks, and I hadn’t seen Zio since he moved up here from CA! That was another lovely visit, and it was another beautiful day outside. The girls played in the backyard and enjoyed being chased by Zio. After that, we headed up to the hospital to meet Daddy.
On Tuesday, the team felt it was time to move her out of ICU again, so she went back to the floor. She was still in a lot of pain and requiring scheduled doses of Dilaudid and Tylenol. She also received Ativan for anxiety, as she was terrified of anybody coming into the room and examining her.
Earlier in the day, before I got back to the hospital, Chad texted me to let me know that Ainsley had p**ped. This is HUGE news, after the constipation/e***a/blockage troubles she had previously. I am happy to relay that she has p**ped every day since, even multiple times a day.
Thursday night, one of the lumens (tubes) on her central line quit working. Fluid and flushes still go in, but blood doesn’t pull back. That’s okay as long as the other lumens keep working, but they wanted to see if the IV team could get it working again. The night shift bedside nurse put TPA (an anti-coagulant medication) into the line at about 3 am and let it sit for about an hour. Afterward, she tried to pull back, and still no blood came out. The IV team came in around 4 am and got the line working again.
Last night, I was saying goodnight to Ainsley and noticed her pillow was soaking wet. One of the lumens was leaking. She had multiple medications and fluids going, so I had to call the nurse to investigate which one might be causing the leak. She didn’t see anything obviously wrong, so she called the IV team to come take a look again.
The IV team came in at almost midnight I think, removed the sterile dressing, did some trouble shooting, and didn’t see anything wrong. I’m not even sure what their thinking was, but it seemed maybe one of the lines hadn’t been screwed in tightly enough. They put a new sterile dressing on and Ainsley was finally able to sleep.
Up until yesterday, Ainsley was still extremely uncomfortable and requesting pain medication. During morning rounds yesterday, the surgeon said they could remove the wound vac and drain to try to make her a little bit more comfortable. He had planned to leave it in until Friday (today), but he thought yesterday would be alright. He wasn’t able to come by until about 3 pm. The nurse gave her Versed before the bedside procedure. Even though she was pre-medicated, it was still pretty difficult for her. However, immediately afterward, she returned to her happy, goofy self. The OLD Ainsley. Pre-sickness Ainsley. She cracked us up and it was such a relief to see her this way again. Still, I wondered how long it would last, figuring it was mostly the Versed making her happy and loopy.
To my great pleasure, Ainsley stayed goofy and happy the rest of the day! She scooted up her bed, nearly standing as it was inclined so much. She played with toys, pretended to be a doctor, examined Kitty, and had a great day. I was absolutely amazed!
Today, she is playing with toys again. She and I pretended to be officers and captured about 25 pretend bad guys. We put them in jail and used a paper telescope to hunt them down. She asked for water, which she hasn’t done in days. The nurse practitioner approved it, and she’s currently happy with her little bottle and straw. She also asked for some of my banana, which she didn’t eat but enjoyed licking and playing with.
We still have a ways to go before discharge. The team started Ainsley’s feeds at a very low rate and volume yesterday. She needs to get up to goal and all of her medications need transitioned from IV to oral. She also needs to finish her antibiotics, and we still have about a week left of those. (I suppose they could discharge us and send us home with antibiotics, but it’s so intensive that I would probably have difficulty keeping up.)
We’re very glad to see Ainsley feeling better and playing. I truly missed her joyful spirit. It’s been a long time since we’ve seen her this good.
Thank you all for your kindness, generosity, thoughts, and prayers. We love you all!