Ainsley Faith and God’s Grace

02/24/2026

***Ainsley update***
02/24/2026

Ainsley has been doing very well!

I’m currently at SCH in the Surgery Center Reception, waiting for her as she undergoes a procedure.

Today, her urologist is performing a cystoscopy to check her transplanted kidney and—I think—take measurements. We’re hoping he can connect her ureter to her bladder in the near future while also staying connected her ureterostomy (where her ureter currently comes to the outside of her abdomen, allowing her kidney to drain urine into a diaper).

To briefly explain, the ureter is the tube that comes from the kidney and—typically—connects directly to the bladder. Since Ainsley has literally never used her bladder, it did not have the chance to grow, meaning it is very low in her pelvis. Since it is so low (below her public bone), her ureter may not reach that far. If not, we hope the urologist can place a supra public (SP) catheter into her bladder from outside of her abdomen. Using that catheter, we could then fill her bladder with a saline solution, gradually stretching it for potential future [normal] use.

More to come on her bladder later!

In other news, Ainsley is WALKING all over the place! She is still quite wobbly, which her rehab doctor thinks is more due to balance than her hip issues.

Hip issues recap: We found out recently that she has “coxa vera”, meaning her hips are angled less than they should be. This can cause waddling and limping, but we’re hoping we can treat it with stretching and continued walking.

Per Google, a quick summary of coxa vera:

“Coxa vara is a hip deformity characterized by a decreased angle between the femoral neck and shaft, typically causing limb shortening, a waddling gait or limp, and restricted hip motion. It is caused by congenital, developmental, or acquired factors (e.g., trauma, rickets)…”

Before Ainsley’s transplant, she had pretty weak bones. Because she was born completely without kidneys, her body was unable to sufficiently provide the hormones necessary for optimal bone health. We tried to offset this by providing her with supplements, including, cholecalciferol (Vitamin D) and paricalcitol (Zemplar). We also gave her daily human growth hormone (HGH) injections. However, there is nothing healthier for the body than actual, physical kidneys. (Also, it’s probable that the HGH injections caused the hip damage. 😖)

For now, we bring Ainsley’s wheelchair with us when we go to appointments. If we go to friends’ or family’s houses, we still bring her old friend, Quiet Car. When she’s at school, she mostly uses her classroom walker.

What else has been going on? She had her pre-K phone conference earlier this month. Actually, it was on her 5th birthday!!!!! (((Yes, our Big Girl turned FIVE!!!! Can you believe it?! Our miracle baby, after having been told she had zero chance of survival, turned five! Praise God.)))

Her teacher had nothing but wonderful things to say, and we are very encouraged that she will be kindergarten-ready in the fall. Come September, she will be united with Big Sisters at Littlerock Elementary. We cannot wait!

What else. Well, she is incredibly sassy! Mimi got to see just how stubborn Ainsley can be a few days ago. She wanted to sit on my lap, and after telling her three times that I needed her to wait, she turned away from me and said, “I’ll never sit on your lap EVER AGAIN.” From there, she proceeded to throw everything off of the coffee table. When I told her she needed to pick everything up, she said, “Never!” And it was all downhill from there.

She continued to shout, “Never!” whenever someone said something to her. She wouldn’t clean her mess, she wouldn’t stop shouting, even though everyone was trying to watch a movie…. Just “NEVER!” Oh, boy….

At that point, I needed to change her diaper. Daddy told her she needed to be nice and stop yelling, and she started to cry. After changing her diaper, I put her on my lap and told her that I never said she couldn’t be on my lap. I explained that she being mean and that it hurts feelings. She stopped crying, told me she understood, and then wanted to get down off my lap. She told me she wanted to go to the kitchen so she could be upset. Okay, Big Girl. She took her walker and went to go be by herself. 🤷🏻‍♀️

So that’s what we’re dealing with! Aside from those kinds of tantrums, she had been incredibly joyful—as always. She’s funny (hilarious, actually), smart, and kind…usually. 😜 She continues to bring laughter and smiles everywhere she goes. In fact, she made friends with some brothers while waiting in the lobby today. She immediately walked to them (because she’s walking now!) and said, “My name is Ainsley.” They looked at the fish together, “ran”, fell, and crawled a bit.

We got labs at the Oly SCH before heading up to Actual Seattle, and we’ll get results tomorrow. I anticipate things will be mostly normal. She’s had some detectable traces of specific viruses in her system, but nothing detrimental or crazy.

For now, I wait for her procedure to finish. I’ll try to post again soon once we know what the plan will be. In the mean time, please pray that The Plan will be as easy, smooth, and seamless as possible. (Bladder cycling can be a slow, tedious, painful, and long process.) We pray that we are blessed with the best news possible—that the urologist will be able to connect her ureter to her bladder.

Thank you all for continuing to check in! Love, hugs, and prayers. 💓

02/24/2026

***Ainsley update***
12/20/2025

I’ve been meaning to post forever, but that’s how it usually goes. 😉

Ainsley has been doing so well! She’s thriving in school and with outpatient PT. I received a progress report from her developmental preschool, and it was a bit discouraging. While most of it was good and showed that she was increasing her skills, there were a couple areas that she was either stagnant or regressing. This was partially due to her missing so many days (for labs, appointments, sicknesses, etc.) Her IEP meeting was about a week after I received the progress report, so I was nervous to meet.

When we got to her classroom for the meeting last week (December 12th), the whole gang was there:

1. Teacher
2. One-to-one paraeducator
3. PT
4. OT
5. District representative
6. One nurse
7. Another nurse
8. Vision teacher

Including us, there were 10 people in the room! Ainsley’s teacher said that he loves Ainsley’s IEP meetings because it’s like a party. I’m not sure if it’s because of how many people are in attendance or if it’s because it’s happy and lighthearted. Maybe it’s both. But it definitely feels like a party anytime Ainsley is around! (Also, her paraeducator had a tiny puppy in her lap, so that kind of made it a party, too!)

Her teacher noted that Ainsley no longer needed cognitive therapy. However, he created a goal for her so that she still had something to work on during their time together. Ainsley tends to have tantrums when she doesn’t get her way. (I honestly don’t know if this is typical. While Big Sisters had their small amount of tantrums, they really weren’t bad.) Her teacher is working on identifying emotions, not just the bad. He’s working to point out when she’s happy, sad, frustrated, etc. He said she even will say when she’s happy, which I’m not surprised. 🙂

In PT and OT, she is progressing. PT is still working to have Ainsley crawl one hand and one knee at a time. (She likes to bunny hop, and that’s how she goes fast.) She can do this, but she does her left hand and left knee at the same time instead of doing left hand and right knee. (Apparently what she needs to work on is contralateral movement. I can’t remember if what she’s doing is bilateral? PT lingo….)

With OT, Ainsley is working to make a closed circle. What she likes to do is make a circle and keep circling, over and over and over again. She hasn’t grasped the concept of making a circle, closing the loop, and STOPPING. However, she can make a straight line, both vertical and horizontal. (Last time I checked, she wasn’t able to. This is part of why I was worried she wouldn’t be kindergarten-ready by the end of the school year.) The OT is also trying to get Ainsley to make a square and a smiley face. She seems confident that she’ll be able to do this with practice, both at school and at home.

The nurses were present at the meeting to discuss Ainsley’s needs. These nurses haven’t been super involved with Ainsley, but they’ll come to the room if she needs assistance with anything G-tube related. While she’s 100% G-tube fed, she hasn’t needed formula at school. They anticipated and acknowledged that that will change once she goes into kindergarten, but they said we’ll talk about that more later. (They said “next year in kindergarten”, and that was so lovely to hear!)

Ainsley’s vision teacher stated Ainsley is still needing help visually with cluttered backgrounds. She’s providing therapy to progress Ainsley in that area. She said that she’s decreased the time she’s spent with her since last year, but that’s been because Ainsley is doing better. This teacher already works at Big Sister’s school, so she’ll continue to work with Ainsley next year! (PT and OT said that as well. I was so relieved and excited to hear that news!)

The teacher had previously said that Ainsley and two other students in her class will attend LRE (Big Sister’s school) for kindergarten. During this meeting, he said there were FIVE preschoolers that would transition to LRE. I asked him to clarify that statement, and he said Ainsley and two others would be in general education, whereas two other students would be in special education. (Note: Several times during the meeting, he talked about her being ready for gen ed. Again, that was such a relief! I hadn’t necessarily considered her being in special ed; I just assumed she would attend LRE. If anything, I thought she would need preschool for one more year and then LRE/Kindergarten after that!)

LRE didn’t previously have a special education class. I think in preparation for these preschoolers, that changed. I’m so glad that Ainsley will know four other students, and she’ll get to grow and develop with them. It is so amazing to know and see and hear how far she’s come. With those students, also! (I know one of the mamas and her preschooler. She already has another kiddo at LRE, and I’ve seen her there while picking up Big Sisters. I love that I’ll be able to continue seeing her there and be able to discuss her daughter’s and Ainsley’s next adventure!)

Finally, last but not least…. Ainsley…WALKED! She ACTUALLY walked! I mean, she IS walking! On Monday, December 15th, she took a few steps toward me. I can’t even remember how it started. I was sitting on the floor and she was in front of me. I think I was trying to get her to do “statue”, standing still, which is what her outpatient PT has been working on with her. She did statue and then quickly took 2-3 steps toward me. I had her stand up and do it again. My father-in-law saw it this time. The next time, she did 4-5 steps. She did it again, and my mother-in-law saw it. From there, she kept progressing! She did 6-7 steps, then 10 steps, then 15 steps…all the way up to 25 steps! It was so, so amazing; we were so caught off guard by this event.

Ainsley started cruising around furniture last year, and at that time we thought she would walk by Christmas. She didn’t, and that was fine. But when she started walking better with assistance and balancing better a few months ago, again, we thought she’d walk by THIS Christmas. As she continued needing assistance, I changed my mindset…maybe she’d walk by her birthday next year. All of her development and progress has been so amazing to walk that I try not to put a timeframe on things. She’s always, ALWAYS gone at her own pace, and she’s also always progressed. No matter what. No regressing, no backpeddling (with the exception of the muscle and strength she lost after her transplant complications in May).

So when she walked on Monday…I was shocked. DELIGHTFULLY shocked. Tuesday, she didn’t walk so much, but Wednesday she had outpatient PT. There, she walked back and forth between me and the therapist. She walked up to 35 steps, I believe. And that night…I walked behind her as we were leaving my in-laws’. She took 68 steps before finally losing balance and sliding down my legs, as I was close behind her. From there, she got up and walked probably another 68 steps to the garage door.

Now, she’s getting stronger and stronger. I love that, even from Monday, she was able to stop while she’s walking, wobble, regain her balance, and continue walking. That’s such a big deal! After all her “statue”, the work has really paid off! Also, she’s always loved to jump in place and also squat. She’s got incredibly strong legs, and I believe all this has built the framework necessary to walk.

Thank you for reading this update and coming along with us on this wonderful journey. With all that Ainsley has been through, we’re in awe of her continued joy. Even when she has to get her weekly labs–she looks forward to seeing her favorite phlebotomists and recovers quickly after the “poke”. (Also, they love her so much that they almost always give her a prize after.)

Until next time…merry Christmas and happy New Year!!!!

10/31/2025

***Ainsley update***
10/30/2025

Ainsley is doing well! Especially considering how she somehow managed to dodge Hand, Mouth, and Foot earlier this month—as well as this week. 😧

Sister Hailey was sent home a few Fridays ago because of a 104 fever. (That had me scared!) The nurse’s assistant put numerous bags of ice on her and stripped her socks and shoes off, which finally lowered her fever. The next day, Hailey had spots/sores and pain in her throat.

(((The week prior, Hailey also had random fever. I rushed her into the walk-in clinic at the girls’ pediatrician’s office then, thinking maybe she had an ear infection. Fortunately, she didn’t, and her fever subsided quickly. So hearing news from the school that she was exposed to HMF and then almost immediately got a ridiculously high fever was NOT awesome.)))

Somehow, both Hailey and Riley did NOT get HMF. Hailey’s version was very mild. Chad, in the other hand, got absolutely SLAMMED by it. Insanely itchy hands, feet, face, and scalp. We tried quarantining the best we could, given our living situation, and also stayed away from extended family. (We sincerely missed them all after just a couple days!)

Once Chad finally started recovering from HFM, Ainsley and Riley got hit with more random fevers. Both of those were also quite quick and only lasted the weekend. (Ha—“only”!) Chad got fever again and sequestered to another round of sickness. (Dig I mention he’s still recovering from his second knee surgery? 😖❤️‍🩹😣)

In the month of October, Ainsley had the following appointments:

⁃ October 1st, dentist
⁃ October 2nd, Occupational Therapy (OT) at home;
⁃ October 6th, OT at home again;
⁃ October 8th, Physical Therapy (PT) at local facility;
⁃ October 8th, feeding therapy at same local facility;
⁃ October 13th, labs in Federal Way;
⁃ October 14th, virtual nephrology (kidney) clinic;
⁃ October 15th, PT at local facility;
⁃ October 16th, OT at home
⁃ October 16th, sleep study at Bellevue medical center;
⁃ October 21st, labs in Federal Way
⁃ October 21st, nephrology clinic in Seattle
⁃ October 21st, brief renal ultrasound in Seattle (with a 2h15m drive home);
⁃ October 22nd, SKIPPED PT AND FEEDING THERAPY BC WAS SICK;
⁃ October 27th, rehabilitation in Federal Way;
⁃ October 28th, labs in Olympia;
⁃ October 28th, pelvic X-rays in Federal Way;
⁃ October 28th, Pulmonology (lungs) in Federal Way;
⁃ October 28th, extended renal ultrasound in Federal Way;
⁃ October 28th, PT at local facility.

Whew! I think I got it all.

November, starting as early as next Monday, will also be chock-full of appointments. But I guess it keeps us on our toes?! 🤷🏻‍♀️

As I’ve said before and—God willing—will continue to say: through it all, she is happy. She is joyful, always laughing, making others smile. She is resilient, quick-witted, entertaining, sassy x300, and smart.

She continues to excel in PT and school. The social butterfly in her and her willingness to try new things her helps her exceed expectations. She gets closer to walking on her own each day.

I don’t know what else to say for now. She amazes me and stresses me out. Why? Quick example and then I’ll call it a night. I took her to Octoberfest with Sisters to their (Big Girls’) school. (This was the elementary school’s fun trick-or-treating event.) Her wheelchair had been left in the rainy downpour and got soaked, so I had no choice but to bring Quiet Car for her to ride through the school. As soon as we got in, I told the Big Girls to stand in line for the first candy station. I immediately saw someone I knew and started small-talking. Almost right away, Riley taps me and says, “Ainsley’s taking off.” I look through the crowd and, sure enough, she’s already yards away!!! This happened throughout the entire evening. 🤦🏻‍♀️

She is courageous, brave, fearless. She inspired me and exhausts me. This kidney came with extra energy as well as extra sass. She is even more spicy than she used to be. But she’s also even more full of life. (How can that even be possible?) After typing all of this, I’m pausing for a moment of gratitude for her deceased donor…along with their loving family. 💔

Thank you to those who have reached out recently, inquiring about and caring for an update. We are all so blessed to have such wonderful, kind, compassionate people in our lives. I can’t wait to share the rest of her journey with you all. 💓

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