Caitlynn continues to struggle with getting completely well. One day a time as she goes through the traditional hospital and testing routines. On January 31st, she had to spend the day with nephrology and rheumatology to. A bone scan, a few months ago, showed signs of osteoporosis. However, Cait’s liver numbers have been great! At the six-month mark, we were able to reduce the amount of medication she has to take. To offset the tradition of hospital visits and testing, Cait, our little foodie, gets to pick a place to eat (when we can). Today, she craved Jinya Ramen, highly recommend it if you’re near one!

Overall, she’s doing better. There are still ups and downs, good days and bad, but it’s so much better than pre-transplant, just different challenges. We are taking one day at a time.

Caitlynn Preservers through

As Caitlynn perseveres though her medical journey, one day at a time, she realizes how hard struggles have been over the years (Our Story). Cait has been really struggling over the past few weeks. Unlike her normal self, she was having trouble bouncing back. She became more and more lethargic. Her appetite dwindled, and she wasn’t herself.

Her medical team has been notified and are keeping a close eye on things. With no improvement, Caitlynn went to the ER today. After a long day of tests, pokes, an ultrasound, and more, the decision was made to admit her.

At the time, there no clear answers. It wasn’t COVID, the flu, or anything obvious. Her liver numbers, general vitals, and ultrasound all looked good, which was a relief.

Caitlynn went on fluids and had a blood transfusion overnight, hoping to give her the boost she needed to turn a corner. Cait was relentless in her determination to win this struggle. However, she was weary from the battle and needed time to rest and recover (February 3, 2024).

The Struggle Is Real

Caitlynn’s battle continued as she had to stay at Levine Children’s for a few days. Cait felt a bit better after receiving fluids and a transfusion. She awaited her GI results and cultures in order to have a treatment plan.

She was able to get a little food and some fluids down, although things were going slow. Very tired, she was quarantined to her room until all the results were back. She was highly upset knowing that meant no visitor or therapy pet visits. They hosted a Valentine’s Day dog party in the lobby and streamed it to the rooms, but it wasn’t the same.

Cait has a fund set up to make these stays a little less difficult. It was set up by the fellowship of Rodgers Park Baptist Church with her story and updates as she navigates this Liver Journey.

A little Transfusion and a Some Fluids

Caitlynn’s struggle involves a little transfusion and some fluids to get her in the right direction. She is awaiting her GI results and cultures to determine the next game plan.

She’s able to get a little food and some fluids down, but it’s still slow going. Overall, she’s very tired. She’s also quarantined to her room until all the results are back. She’s pretty upset about, especially since it means no therapy pet visits. They’re hosting a Valentine’s Day dog party in the lobby and streaming it to the rooms, but it’s just not the same. However, in the words of Caitlynn, “I’m sorry, but if there is a dachshund down there, I’m running.”

We’re hanging in there, just taking things one step at a time. So far, Caitlynn has had X-rays, CT scans, ultrasounds, countless blood draws, multiple IVs, and today, she’s having an EGD, a colonoscopy, and a bone marrow biopsy. We had a bit of a scare with some blood loss, but thankfully, that seems to be under control. They’re checking for ulcers, which have never been an issue before, but hopefully, the scope will give us some answers.

The good news is that Cait has a little more energy, but she hasn’t been able to eat since Tuesday afternoon, and she is beyond ready for a meal.

So far, every test, viral, bacterial, blood work, has come back negative. We’re still waiting on more results, and CMV is a possibility. Because her immune system is suppressed, if it is CMV, she may have a harder time with it than most.

Her numbers are starting to level out, though her white blood cell count is still low. It feels like a slow process, but we’re relieved that she’s looking and feeling much better today. Hopefully, we’re getting closer to some real answers.

We Have a Plan

We finally have some progress and a treatment plan! Since Caitlynn is immunosuppressed, her body has a much harder time fighting off common bugs that most of us can shake off without even realizing it. It has taken six days, countless tests, and a lot of waiting, but we now have some answers. It looks like Cait has a bug in her GI tract that really took hold and knocked her down. The colonoscopy revealed some not so fun stuff, but it also gave us much needed clarity on the symptoms we’ve been seeing.

The good news is that over the past few days, we’ve seen steady improvement. She’s starting to feel more like herself, but it’s going to take time before she’s truly in the clear. Her treatment includes an antibiotic that comes with its own set of challenges. It can impact her already low white blood cell count, and with her immunosuppressants also affecting her levels, it’s going to be a delicate balance. On top of that, her spleen is still quite enlarged, playing its own role in reducing her white and red blood cells. (That’s a battle we’ll tackle down the road.)

Right now, it’s a careful dance of adjusting her rejection meds and immunosuppressants just enough to let her body fight this bug, without putting her at risk for rejection. It’s going to be a slow process, but the goal is to get her healthy and back home safely. She may need to go home with a PICC line, which she’s not thrilled about, but it’s the most effective way to ensure she gets the medication she needs to fully recover.

Through it all, Caitlynn has remained in great spirits. Her appetite is coming back, her sass is in full force, and, true to form, she’s already made a name for herself in the unit. She even had a visit from one of the therapy pups, which brought some much needed smiles and laughter. If everything stays on track, we’re hopeful she’ll be able to break out of here early to mid-next week.

Looking For Normalcy

We are beyond ready to get back home and return to a little bit of normalcy. Thank you all for your love, prayers, and support, it means the world. Caitlynn is strong, resilient, and absolutely incredible, and while this road isn’t easy, she’s facing it with courage and grace.

She’s getting stronger every day, and we are so grateful for the progress she’s making. She’s on a regimen of multiple antibiotics to help fight off the bugs she’s currently battling. As mentioned before, this process is a delicate balance, they’ve had to ease up on her immune suppression medication to allow her body to work alongside the antibiotics. It’s a slow dance, with constant lab work to monitor her levels and adjust as needed.

One big step forward, she’s off IV fluids. Other than her daily medication infusions, she now has much more freedom to move around, and she’s been making the most of it, exploring the hospital.

Today, there is Puppy Power Hour in the lobby where she will get some well-deserved pup snuggles. Yesterday, she had a visit from Sprout, and even more time with Hope (the Doodle) today. If you’ve ever seen this girl around the dogs, you know she lights up from ear to ear. On top of that, today is also carnival day! The kids will get to play games and win prizes, which has been such a bright spot for her. Now that all her precautions have been lifted, being out and about has made such a difference in her spirits.

Hunger in the Air

Caitlynn’s appetite is slowly coming back, though she’s taking it easy to avoid upsetting her stomach (those antibiotics can be tough). But she’s getting there, and we’re celebrating every little victory. Right now, we’re waiting on the final results of her bone marrow biopsy. With her white blood cell counts being a little all over the place, the doctors are making sure the fluctuations are due to her medications and her enlarged spleen rather than anything more concerning. Once we have those results, we’ll have a clearer long-term plan and hopefully, a timeline for discharge!

She was especially excited to hear that when she goes home, she’ll be switching to oral medications, which means no more PICC line! If you know Caitlynn, you know how tough she is, but even the bravest have their limits when it comes to IVs and midlines. This news was a huge win for her!

We’re hoping to have more clarity today or tomorrow about when we’ll be heading home. The thought of having all our girls under one roof again can’t come soon enough. Trinity Blake sweet smiles and warm hugs, Vivi Bean’s endless chatter and boundless energy, and of course, our pup Ella, who’s currently living her best (and most spoiled) life at Papa Dad’s house.

Thank you to everyone who has reached out, offered help, sent prayers, and shared positive energy. Your love and support mean everything. Things are looking good, and we are so grateful. Thank you, Lord, for watching over us.

Caitlynn is Free…Back Again

Cait was released last Friday and seemed to be doing well. But over the past few days, she just wasn’t herself. So, she made a trip, and she was admitted again. Hopefully, this stay won’t last another 12 days. Bloodwork shows the bug she was fighting is under control, however, looks like she may need some help getting a few numbers back up to aid in recovering. There is never a dull moment.

Caitlynn struggled with a 103 fever, stomach issues, and no real help from staff. Six hours in, I still couldn’t get any traction, and shift change only made things worse. Finally, by 9 PM, we got a room, and within 15 minutes, they gave her meds to settle her stomach. She finally got some relief. It’s been a while since I’ve seen her that uncomfortable, but she powered through.

We still don’t know why she took a turn so soon after being discharged last Friday. The doctors are rerunning many of the same labs to rule out anything new, and so far, nothing alarming has popped up, which we’re grateful for. Her white blood cell count has been historically low, she’s neutropenic, and on immunosuppressants, not exactly ideal for a quick recovery.

Caitlynn started bouncing back, eating again, feeling better, and even sending me out for Pho (Vietnamese food). She’s still on fluids, magnesium, potassium, and a few other meds, but there’s no discharge plan yet. Cait, however, is threatening to escape since she promised to cook Vivienne dinner for her birthday tomorrow.

On February 15^th, Cait had a few procedures this afternoon: an EGD, colonoscopy, and they are also placing a PICC line. Her spirits were a little low having to go through all of this.  She is never a fan of the clean-out process. However, she was ready for some mashed potatoes and gravy once out of anesthesia. Being stuck in this room was making her stir-crazy. The PICC line should help a lot with meds and nutrition. We are still taking things, one day at a time.

It’s Nutrition Time

(February 27) Caitlynn has started receiving her nutrition through her IV, which has been a fun balancing act, clearing out for the colonoscopy and then raiding the café and Panera to fill the void. Thankfully, she was now able to eat whatever she wanted alongside the IV nutrition.

Things got a little concerning Tuesday night. Around 9 PM, her heart rate started spiking and dropping repeatedly. The nurse drew labs to check her electrolytes and magnesium levels. They gave her magnesium, but it did not quite fix the issue. Then, her fever spiked to 103 again. Around 3 AM, X-ray came in, and it turned out her PICC line was a little too long and interfering with a valve in her heart. By 7 AM, the team adjusted it, and so far, that seems to have done the trick. It was not a fun experience, there were tears, but in true Cait fashion, she powered through.

She continued to fight off the infection that landed her in here. Labs showed improvement in her bloodstream, but things in her gut were still being stubborn, improving, but not quite there yet. They are backing off some of her meds to give her immune system more room to fight. She was overly ready to get out of here and has been extremely down in the dumps, but thankfully, Child Life comes by daily to lift her spirits. Tara and I try, but let us be honest, we do not have window markers or let her squirt 20 syringes around the room.

So far, we have spent 18 days this month at “Hotel Levine.” It is nice and all, but we are beyond ready to sleep in our own beds and return to the daily chaos we once took for granted.

Caitlynn and family are grateful to everyone who has checked in, reached out, and offered help. We truly appreciate it more than we can say.

A Relentless Roller-coaster Ride

(March 2) It’s hard to put into words the relentless roller coaster of having a child with a chronic illness. For those who have not lived it, who have only stood on the sidelines, close enough to see but not close enough to feel the aftershocks, I pray you never have to.

It never gets easier. The weight only grows heavier as time marches forward, pressing into corners of your life you never expected. It seeps into everything, your relationships, your career, your sense of self, until you realize that some of the things you once thought mattered never really did.

You learn hard lessons in loyalty, the kind that sting. You see how far compassion really stretches, and sometimes, where it abruptly stops. You come to understand that you are stronger than you ever imagined, but also that even strength has its limits. And through it all, those who truly love you, the ones who see the struggle behind the brave face, stay. No matter how heavy, how exhausting, how cumbersome it becomes, they stay.

But you? You are just trying to hold it all together. You fight for your child with everything you have, while desperately trying to keep your own mind, your own heart, from breaking. You show up to work, paste on a smile, and try to function at the level you always have, until one day, you realize you cannot. And the fear sets in. Fear of losing the job that keeps your world afloat. Fear of not being enough for everyone who depends on you. Fear of what happens if you fall apart.

Friendships fade. Some people drift away because the weight of your reality is too much for them. And yet, even in loneliness, even in the exhaustion, you cling to the love that remains. The people who do not leave. The ones who show up. The hope that somehow, some way, you will keep finding the strength to fight another day.

Because that is what parents do. Even when it hurts. Even when it feels impossible. We keep going. Because love, real, unshakable love, demands nothing less.

Twenty-four Days at Hotel Levine

Today, March4, marks 24 days of living at Hotel Levine since Cait was first admitted on February 3rd. We had a brief break, just a few days, only to find ourselves right back here the following Friday. Not exactly the vacation we had in mind, but hey, at least the food is decent.

Thankfully, we have the essentials, laundry facilities, unlimited coffee, and some snacks to get us through. Funny how quickly you settle into a rhythm, even when surrounded by uncertainty. We’re not alone, either. Other families in identical blueprint rooms, living the same reality, carrying that same weary look in their eyes. Yet, there’s an unspoken reassurance in the quiet hello’s as we pass one another in the halls. A nod, a glance, a silent understanding that we’re part of the same unchosen journey.

Cait’s progress is slow, frustratingly slow. The journey is full of ups and downs, sleepless nights, tears, hugs, and endless “I love you’s.” It’s a delicate dance of managing her meds, antibiotics, pausing immunosuppressants, shots to boost white blood cell counts, restarting immunosuppressants, then the occasional unit of blood to help her lift her hemoglobin.

The weekend was tough, but we went outside for a short bit. The meds have been hard on her stomach, cramps, gas, discomfort, but she’s starting to get up and move more, which helps.

For now, the plan is to stay the course. They’re beginning to scale back IV nutrition, encouraging her to eat more solid food and regain some strength. They’ve adjusted things so she gets four + hours a day off the IV, and we take those moments to get out for a walk when she’s up for it.

Her numbers are crawling in the right direction, agonizingly slow, but forward is forward. We’re missing the girls, and we’re pretty sure the dog thinks we’re never coming home. No discharge date yet, no concrete timeline, just one day at a time.

Caitlynn Is Finally Home

Yesterday marked 32 days since February 3rd, the hospital basically became our new home. Last week, the fevers stopped. Staff began backing off some of her medications and removed the PICC line in hopes that she could start eating again. But, of course, another setback, Cait’s liver numbers spiked, and doctors grew concerned about rejection. They scheduled a liver biopsy last Wednesday and, at the same time, placed an NG tube.

To make matters worse, the NG tube was too large. When she came out of anesthesia, she was in absolute distress, gagging and choking. It had to be removed and replaced while she was awake. I knew this is routine for some children, some even place one nightly themselves, but for Caitlynn, experiencing it for the first time was absolute torture. Fortunately, a day later, the biopsy results came back, no rejection.

Since she hadn’t eaten real food in almost a month, they started her feeds through the NG tube. But it was incredibly uncomfortable. They began at 30% of her daily calories and slowly increased to 110%, but it was a difficult adjustment. However, after several days, we finally got there.

For 32 days, we lived at Levine Children’s Hospital with Caitlynn, with only me leaving for work and returning each night. It was a whirlwind of stress, sleepless nights, and uncertainty. But I am happy to say that at 3 PM yesterday, Caitlynn was discharged and finally able to go home.