Ainsley Faith and God’s Grace

07/18/2025

07/18/2025

***Ainsley update***
07/03/2025

Life with Ainsley post-transplant continues to be chaotic. While her last inpatient stay was brief (she was discharged the following day), we continue to come back for labs, clinic appointments, pharmacy, and ultrasounds.

On a good lab day, Ainsley’s creatinine (kidney level) is at .6, maybe .7. It was at 1.2 before her last hospital admission, and it came down to .9 during her overnight stay. A couple days later, it had come down to .8. The team was reassured that it was coming down, and they also agreed that it had likely increased bc Tacro, her primary anti-rejection medication, had also increased.

Since then, her creatinine hasn’t come down much. It came down to .8 and as of today is back up to .9. On Tuesday, her ureterostomy (where her urine leaks out of her abdomen) stent (tiny tube to keep the hole open) came completely out. I went to change her diaper before saying goodnight to her and was quite surprised to find it completely out.

Since the stent had come out a little bit previously, the team made a plan for what we should do in the event that it came out entirely. And I’m glad we did! Per the plan, I called the on-call urologist. (The SCH receptionist basically pages them and the provider calls us.) She said she was going to call the on-call attending and get back to me. About a half an hour later, she finally called back. She said the on-call attending wasn’t answering for some reason (😡) but that she had looked through the notes in Ainsley’s chart. The notes said nothing needed to be done urgently as long as she was still p*eing. She was, luckily, and we had post-transplant clinic two days later. The urologist said we should get labs that day (which is part of clinic anyway) and they would schedule a renal ultrasound to make sure everything looked good.

Ainsley had an ultrasound last week and we never heard back about the results. We assume no news is good news, but I was still anxious to hear from the team at clinic today. They said last week’s results showed some fluid in the kidney. However, today’s results showed much more.

Also, I should note: when the CNA came in to do Ainsley’s vitals and get her checked in, she said she wanted to confirm Ainsley was off feeds “bc uro wants to do something”. GREAT. Thanks for the communication, guys…. Fortunately, Ainsley had been off feeds since I gave her the anti-suppressants at 9 and 10 am.

To give perspective of how today has gone…. We left Olympia a little after 6 am. Stopped and got coffee so probably got into the freeway about 6:20. Ultrasound check in was at 7:20 in the Federal Way South Clinic. Ultrasound was scheduled for 7:45. Ainsley’s labs are always at 8:30 before her 9 am meds. The S. Clinic has a lab there, so we were able to get those drawn immediately after the u/s.

After labs, I had to change her butt in the car bc she had pooped sometime during her appt. She freaked out slightly less bc I was able to put a blanket down and have her hold onto something. (It was only the handle of a paper bag, but it was sufficient.)

After changing her diaper (it’s STILL weird to see p*e in them!!!), we headed up to Seattle for her 11 am clinic appointment. It was originally supposed to be at 9 am, but with the last minute ultrasound being scheduled, clinic needed pushed back.

The team came into her 11 o’clock appointment 40 minutes late. We had arrived an hour early, and I was glad to have that time to go down to pharmacy and pick up a medication. The second medication that the provider was supposed to have put in last week was NOT put in. I requested a refill and the pharmacist put me back in the virtual line so I could come back down when it was ready. That went quickly, and I was able to get the second medication before her 11 am appt.

Finally, the team came in and said Uro DID want to place a stent. The surgeon had cases (surgeries or procedures) all day, but she was going to squeeze Ainsley in somewhere. The OR said they didn’t have a room available, so it would need to be sometime this afternoon. GREAT. By now, it was lunchtime, so Ainsley and I headed over to the cafeteria.

Remember how Ainsley got adenovirus AND C-Diff while inpatient immediately after her transplant? Well, we’re pretty certain she got both from the cafeteria. Since then, I’ve kept cleaning wipes in my bag so I can wipe down the table before we sit. (These wipes won’t protect against C-Diff, which is resistant to everything except bleach, but I figure it’s better than nothing.) We…I…ate lunch bc Ainsley needed to stay off feeds for the upcoming, unscheduled appointment.

A little after 1 pm, we went to the car so she could take a nap. I had parked on the 8th floor, which is the ground floor. I re-parked on 6 in the parking garage where it would be cooler and she and I could both sleep. I’m happy to report that she slept for about 2 hours. I dozed off and on but really wasn’t able to get comfortable. Once she woke up; we hung out in the car for about 30-45 minutes. By this point, it was 4-m:45 and we still hadn’t heard anything about when the procedure would be. Soooo…what to do???

I loaded Ainsley into her stroller and took her down to the surgery center reception. I explained that she was supposed to have a procedure but I had no idea when and hadn’t heard an update in the last five hours. She did some digging and found out we were still waiting on an OR availability. Not only that, but we were in the wrong part of the hospital…. So after moving my car from 8 to 6 bc the surgery center is on 6 but then going back to 8 bc the entrance to 6 was closed…I loaded Ainsley into the car AGAIN and drove from Ocean to Forest where her procedure is going to be…sometime….

And now…we’re waiting. The bonus is there’s a Keurig, snacks, water, a nice sitting area, a view, and sunshine…. The bad news is it’s 6 pm and we still have no idea what’s happening. When she woke up from her nap, the poor girl said she wanted a cookie for her tummy. I confirmed that that’s what she said, and then she said she wanted a yummy snack. 😭 Sorry, Pretty Girl…no snacks for you yet.

So now…we wait. Have a great, long weekend, everyone! Stay tuned, y’all.

07/18/2025

***Ainsley update***
06/20/2025

This posts is so true. Ainsley was born at 32 weeks and didn’t come home until she was 7.5 months old. The NICU and PICU were very lonely, isolating place.

Ainsley is inpatient again. Yesterday’s kindney labs did not look good. Her creatinine went up from .7 to 1.2 between Tuesday and Thursday. Yesterday was a holiday, so we didn’t get a concerned hospital call until today. They’re going to give her fluids and monitor her. Hopefully morning labs look better.

07/18/2025

***Ainsley update***
06/10/2025

I started writing this on Sunday, 06/08, but I wasn’t able to finish. I’m trying to edit what I wrote previously as I update new information now, so hopefully this all makes sense when I’m done.

Unfortunately, Ainsley landed herself back in the hospital on Saturday. We enjoyed one night together at home on Thursday and one night together in the hotel near the hospital on Friday. Then, Saturday morning, I took Ainsley to the hospital for labs. (These were routine labs while we figure out the right anti-suppressant medication dose, though we won’t typically have Saturday/weekend labs in the future.)

Labs were relatively easy. Of course Ainsley cried, but she quickly recovered and went back to her normal, happy self. The doctor also ordered a urine sample, which meant I had to wait patiently for Ainsley’s p*e to leak out her ureterostomy and catch it in a container. She was on the bathroom changing table for this and SCREAMED the entire time. (Background, a few months ago, she started freaking out during diaper changes if her legs were dangling off the couch. She seems afraid that she’s going to fall and feels extremely insecure.) She also pooped, but I couldn’t change her bc I didn’t have extra diapers in her stroller bag….

Once I got enough urine—they only needed one ml, but I wanted to make sure there was more just in case—we headed down to the car. There, I gave her the anti-suppressant medications as to stick to our very strict schedule. It was hot outside and I was sweaty, but finally we went “home” to the hotel.

Once we got into the hotel room, I changed her diaper. She started to freaking out while laying on the bed (legs NOT dangling) but was comforted with Dad’s arm around her. I sat her up upon finishing her diaper change…and she promptly threw up all over herself. Lovely. (She wasn’t sick, and she didn’t throw up anymore after that. However, her stomach is very sensitive to crying and being jumbled around, and I think going from lying down to sitting up so suddenly was too much for her little tummy to handle.)

After cleaning her up again, I got a call from SCH. It was one of the nephrologists, and he said her creatinine (kidney level) was elevated. When we discharged on Thursday, her level was at .5, which is beautiful for post-transplant. Saturday morning’s labs showed it was 1.3, WAY too high. The nephrologist explained we needed to come in for an ultrasound.

Going back to the hospital for the u/s was a nightmare. The gal at registration was very patient, making phone call after phone call to figure out where to send us. Turns out, Radiology only does inpatient ultrasounds on the weekend, and they thought we were being admitted. I told registration that they was NOT our understanding; nothing was said about an admission. Radiology then said we needed to go to the Emergency Department (ED) if we were doing the u/s outpatient. So I walked all the way to the other side of the hospital and got registered at ED. (Chad and the girls were with me, as we planned to drive back to Olympia together for the rest of the weekend after the u/s. They hung out at the main hospital Starbucks while I proceeded to ED.)

The ED nurses had to place an IV bc Ainsley apparently needed more labs. Her potassium was high at her morning labs and they wanted to re-check it. The second check WAS a bit better, coming down from 6.1 to 5.8. However, anything above 5.5 is too high.

After that, Ainsley got her u/s. It took an hour and she somehow slept through most of it. She cried initially, but Dad comforted her, apparently enough to rest. That was pleased the heck out of me bc it was 2 pm, naptime.

Since her potassium was high, a nurse came in after the u/s to do an EKG.(Elevated potassium can lead to irregular hearth rhythms and issues, which we definitely don’t want.) Ainsley was awake by then and handled the testing well.

The nephrologist whom I spoke on the phone with came in shortly after the EKG. He said the u/s showed fluid in the kidney. His guess was the stent should not have been removed from her ureterostomy on Thursday and she would likely need another one placed. She would need admitted so the team could monitor her labs. Hopefully they would see her creatinine come down after Urology addressed the ureterostomy issue. Before he left, he took a quick look at her EKG results and said everything looked good.

We got a room on the floor shortly after that and an Urology resident eventually came by. He was able to place a temporary catheter into her ureterostomy and p*e immediately came out. They left the catheter in so the kidney could continue draining better. They wanted to see what her labs looked like at midnight.

Chad and the Bigs, having been with us in the ED and in her room on the floor, retreated to the hotel room around 9 pm to get some sleep. I stayed with Ainsley. (Earlier in the day, I had gotten a call from RMH. They had a large room available to accommodate our entire family. I had hoped we could move out of the hotel and into the RMH room yesterday, but things quickly became chaotic with ER, u/s, getting an IV place, and eventually getting admitted. I called RMH and told them we’d have to wait until the morning.)

As I wrote the update on Saturday night, the nurse came in Ainsley’s room to connect her to feeds per the team’s order. It seemed a stent would NOT be placed once her stomach was empty. Frustrated, I told the night shift resident nephrologist that we were told a stent would likely be placed if the midnight labs showed an improved creatinine level. The resident didn’t seem to know much. She kept repeating that she was “just the messenger” and that Ainsley was no longer having midnight labs. The team wanted to wait for her regular morning labs and make a plan from there. I had her go back and talk to the team. She came back later, stating they agreed Ainsley could be NPO starting at midnight in case Urology decided to place a stent in the morning.

Sunday morning, Ainsley had a follow-up u/s. Urology came by after reviewing the results and said there wasn’t much change; there was still fluid in the kidney. They wanted to monitor how things went over the next few days. I closed my eyes for a long time when the doctor said that. She quickly said, “It’s up to nephrology if you get discharged. Is that what you’re concerned about?” I said YES.

The attending urologist also said she didn’t think a stent would be better than the catheter. Chad (not yet there) and I disagreed, as her creatinine level shot up immediately after the stent was pulled out. Also, a stent has multiple holes in it, allowing for more urine to come out. The “catheter” the resident placed into her ureterostomy was technically an NG tube (nasal-gastro feeding tube). It had only two holes, which seemed less efficient to us, the non-doctors. Fortunately, one of the nephrology surgeons agreed with us and asked Urology to place a stent.

After having been NPO (no eating/empty stomach) for many hours, the day shift nurse came in to connect Ainsley to feeds. Urology didn’t want to place a stent, so she was OK to eat. Thirty minutes later, the nurse came back in DISCONNECT Ainsley from feeds…. The nephrology surgeon had talked to Urology and advised they place a stent. So feeds stopped again…making her NPO again…. The procedure was scheduled for about 4 pm, and there was one case (child’s procedure) ahead of her.

While all this was going on, Chad was moving everything out of the hotel and into the car. (I had literally unpacked almost everything from the car and found each item’s perfect place in the room). He checked into the RMH for me, basically only dropping off her refrigerated medications into the room’s fridge, and then came back to hospital with Bigs.

Throughout Sunday afternoon, Ainsley’s procedure was pushed back many times. When she finally went downstairs for the stent, it was about 8 pm. She and I got to ride in her bed together bc she was so distressed. When she came out, it was about 9 pm. The procedure went well, though she did experience bronchospasms (the muscles surrounding the lungs' small airways tighten, narrowing the airways). She has a history of this happening during anesthesia, so we used her Albuterol inhaler before she went downstairs. The anesthesiologist also used Albuterol during the procedure.

When I was able to meet Ainsley in recovery, she was resting peacefully. Once it was time, the nurse started trying to wake her up. It started out well, but then she coughed, gagged, and threw up. The nurses suctioned her and got her settled down. The anesthesiologist was there and listened to her lungs to make sure they didn’t get j***y from aspiration. After about 15 extra minutes of monitoring, she and I were transferred from the PACU (post-anesthesia care unit) back to her room together. I got to ride in her bed a second time as she was upset again.

Around 10:30-11:00 pm, I left with the Big Girls to sleep in our new RMH room. Chad stayed with Ainsley. Much to our dismay, that night was a very rough night. Her respirations and heart rate were extremely high, and she also spiked a fever. This combo earned her another transfer to the ICU. Chad got about 20 minutes of sleep that night between all the commotion, transfer, stress, and staring at her vitals monitors while the numbers went crazy.

Sometime in the early morning, Ainsley’s breathing and heart rate returned to normal. The team had already started started Ainsley on prophylactic (preventative) antibiotics in case she had a virus. They had also taken blood to run a viral panel. The results showed she was positive for adenovirus. (While I was frustrated that she caught the virus AGAIN, the team was not concerned and believed she was simply STILL testing positive from the prior infection.) Around 4 am, Ainsley had another u/s. The team wanted to compare before and after the stent was placed. Fortunately, things looked much better! The fluid had drained, and labs later showed her creatinine was back down to .8.

Sunday was Chad’s birthday. While I was grateful we could all be together, that was NOT the ideal way to spend a birthday. Monday was better, but he was pretty exhausted. I, on the other hand, felt well-rested. I got to sleep with Bigs at RMH. We got up and had free breakfast. I took a shower. We unloaded the car together. We made our room our new home away from home. Then we went to the hospital and Chad and I traded places. He was exhausted and needed sleep, and since Ainsley tested positive for adenovirus, Sisters were no longer able to visit.

On Monday, the team monitored her to make sure her kidney labs continued to look better. Chad, the Bigs, and I had all driven up to Seattle together on Friday, so we were all kind of stranded together. Chad didn’t direly need to work on Monday, so we called the girls’ school to let them know they’d miss another day of school. I explained that Ainsley was back in the hospital already and we were all in Seattle together. They’ve been wonderful and understanding and supportive, and I’m so grateful for our little community. Later in the afternoon, Sandie/Mimi drove up so she could bring Chad and the girls back home. She got to see Ainsley briefly, but Ainsley had just woken up from her nap and was a wee bit cranky.

We had hoped Ainsley would be discharge yesterday, but we still hadn’t heard a plan from Urology. Today, TUESDAY, Ainsley’s original transplant urologist came in to speak with me. She wants to leave the stent in for now. In a month, under anesthesia, they can take it out, look at her ureterostomy, and decide whether a new one needs placed or not. If her ureter is straight and the opening is flexible enough, they may leave the stent out. If it still feels narrow when they probe it, they’ll place a new stent. Some kiddos DO need chronic stents, and Ainsley may be one of those kiddos. (Honestly, with as complex as she’s been her entire life, I wouldn’t be surprised if she needs them on a continual basis).

The team wanted to keep Ainsley for another day so that she could finish 48 hours of antibiotics. Then, if her blood cultures didn’t grow anything gross, she could discontinue them. I told them I’d hoped to take her home and asked if we could do anriviorixs at home until we heard whether they could be stopped. Another doctor spoke up and suggested we stop antibiotics at 36 hours. Then she could get one more dose and we could be on our merry way out of the hospital in the afternoon. Fortunately, the team agreed to that! So that is what happened. They gave her one more dose of IV antibiotics )while she napped) and then we skid-addled on outta there!

We DISCHARGED around 3:30 pm this afternoon. Her labs look good. Her kidney levels are happy. Her urine output looks good. She and I went directly to Ronald McDonald House (RMH). I was so excited for her to see the place. Our room is large and cozy, and the whole establishment is VERY family friendly.

We went upstairs to our room first, unloaded some things, got her changed out of her hospital gown, then went downstairs for food. After eating, we got to spend time with a therapy dog named Angus. He was very sweet and very soft! He’ll be back again in two weeks. He must be going on vacation, bc otherwise he’s there every Tuesday. Other doggies come and visit throughout the week. I’m eager to see them all!

After seeing Angus, we went outside to the play area. Ainsley walked (with my assistance), crawled around, and went down the slide a couple times. Once she was finished, we went inside and played with a doll house. Once she was done with that, she played with a Hot Wheels track. Once she was done with that, she played with trains….. Finallt, we retreated to our roll bc Mama was tuckered!!!

Tomorrow we’ll have labs again. We are still trying to find the right balance of her anti-suppressant medication, Tacro. That can be difficult with ALL transplant recipients, so nothing special there. After that, I’m hoping we can go to a couple libraries to return books, and then…RELAX!

I’m so relieved, yet again, to be out of the hospital. It’s been a continuous roller coaster with one thing after another. We have no idea what the rest of the week will hold, but for now…she’s healthy

07/18/2025

***Ainsley update***
06/05/2025

Guys…Ainsley was discharged!!!

Tonight…for the first time ever…we’re all sleeping…and PEEING…together, under the same roof.

I know that sounds extremely weird. But you can’t possibly fathom how incredibly excited I am that Ainsley is p*eing. Her kidney (her FIRST EVER, very own kidney!) is doing a wonderful job. It’s working, it’s flowing, it’s doing stuff and things!

Ainsley and I were finally able to leave the hospital at about 4:30 pm today. I had to load a cart up with all of our things. )It’s kind of ridiculous what living in a hospital looks like when you organize it into a cart.) Brought that down to the car—taking three elevators to get to the part of the hospital where the inpatient parking garage is. Unloaded the cart, then re-loaded said cart with two dyalisis machines. (Our original machine wasn’t quite working properly, so we were sent a new machine. However, the dialysis nurses never gave us the activation code, so we kept using the old one. We no longer need either! 👏🏼🙌🏼) Went back upstairs to her room (again using the three separate elevators). Realized I hadn’t grabbed her medications from the mini-fridge and had to get a bag of ice from the nurses. They also realized the formula brought up by the milk lab wouldn’t expire until tomorrow, so they sent us home with that, too. Said goodbye, got Ainsley in her wheelchair. Went downstairs, got coffee for the road, took two more elevators to the car. Got to the car…and realized I forgot my keys in her room.

F.M.L.

Went BACK upstairs (again using three elevators!), almost couldn’t find my keys. Found my keys. Went back downstairs three elevators…downstairs to the car.

Spent 2.5 hours in traffic. Quite enjoyed the beautiful sunshine on the way home. Listened to some good music. Ainsley watched her tablet and then slept for about an hour. It seemed like everything was greener. Has the scenery gotten even more green in the 27 days we’ve been in the hospital?! Has Spring in fact sprung?! Are we truly almost officially into summer? It was almost like having been blind for the last month, staring at bland hospital walls. I truly appreciate being outdoors.

It wasn’t long after being home that it was time to do Ainsley’s anti-nausea medication, in preparation for her [two] anti-suppressant medications. We did that at about 8 pm, followed by MMF (anti-suppressant) at 8:20, followed by Tacro (second anti-suppressant) at 9 pm. Shortly after that, it was bedtime. Which of course took an hour between the three girls. 🙄🤣

Tomorrow, Ainsley and I will head back up to Seattle. Since she’ll have twice weekly labs and weekly clinics (all on separate days), we’ll need to stay near the hospital for a while. Not sure exactly how long. Because she was in the hospital for nearly a month, she’s “already” down from twice weekly clinics to once. That’s a bonus! I’m hoping that means we can go home in the next few weeks instead of staying an additional couple/few months in Seattle. Time—and doctors—will tell.

For now, for tonight, we’re home. And we haven’t ALL been together in 27 days. Tomorrow would have been four weeks since Chad and I went up to the hospital together. And before that, I had gone up to the hospital with just me and Ainsley. And before that, I had been in California for my abuela’s burial. So right now…right now, it’s good to be home.

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 pooped. This is HUGE news, after the constipation/enema/blockage troubles she had previously. I am happy to relay that she has pooped 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!