These are the updates of Caitlynn’s liver transplant. It includes her hospital visits as well as doctor visits. COTA has helped in many ways.
On June 7th, Caitlynn did great, and progressed nicely. She was heavily sedated and intubated; an ultrasound was planned for 10 am, with hopes of getting her tube out and breathing fully on her own. Caitlynn exceeded expectations from the beginning, however, there was still a long road ahead. There was a span of 2 weeks before they even consider letting us come home. It was still one day at a time.
The next of the updates of Caitlynn’s liver transplant June 8th found Cait doing well still exceeding expectations. Rounds with the entire team this morning all indicated solid progress, stable numbers and progression with treatments. This was the first collaboration between Levine Children’s Pediatric Liver transplant team and UPMC. We had surgeons, ER doctors, Anesthesiologists and Nurses (over 20 professionals) from both hospitals here working as a team just for her. Cait was put on some additional pain management that got her comfortably through the night.
Liver Transplant Results Are Good
June 9th showed everything looking great! The UPMC team had nothing but positive feedback and results. The surgeon was beyond happy with the ultrasounds and her progression. She was only day 2, but the doctors treated it as if it was day 3. The NG (food) tube was taken out and Caitlynn started trying to eat some actual food. She has been NPO (without food orally) since Wednesday night. She hated the NG tube but dreaded taking it out all the same.
On June 10th, we moved out of the ICU this morning around 7 am. Everything is still going amazing. She is still exceeding expectations, meeting all the benchmarks, and pushing herself all morning. She started trying to eat, move on her own, remain awake and alert, and watch some TV. During this time, she was very sluggish. However, her physical therapy team motivated her as she knew this was the next step to take to get home. We reserved a room at the Ronald McDonald House and moved over there for a few days to acclimate.
Hospital updates continue to be Positive
The updates of Caitlynn’s liver transplant continue on June 11, when doctors agreed to remove a few more tube sand IVs. She had a main arterial IV in her neck, she hated it, but it was the best place to pull labs. The goal was more physical activity and hopefully get outside for a few mins daily. Her energy was low, but her lab work looked better daily. It would take some time before her body starts doing its own thing, considering her liver was in failure for a few years it will be a bit before her body re-adjusts to normal function. She got stronger every day and started smiling again, she could see the light at the end of the tunnel.
June 12th found Caitlynn waking up at 5:30 AM and full of energy. She walked around the unit, took a trip outside, checked out the gift shop, ate all sorts of food and grabbed lunch in the cafeteria. She stayed awake all day and really started to get back to the Caitlynn prior to her transplant. Things were going well and ahead of schedule. A long road still awaited this 12 year, determined to beat the odds. She still has over 5 weeks of consistent meds, PT, bloodwork and more.
At this time during her journey, she had to stay isolated from the outside world. She had a TON of immune suppressants and other medications to fight off infection. We decided to err on the side of caution, any illness or infection could severely complicate her transplant.
Great News for Caitlynn
On the 13th of June, Caitlynn got all her tubes, drains, IVs and Central line out. PT had her climb stairs and walk the unit. Caitlynn was discharged from the hospital, and we were able to go home! Over the next couple days Caitlynn still have had a ton of follow up appointments and labs. This is amazing, this girl was admitted, got a new liver and was discharged in a week, what a blessing! Caitlynn started looking much better. Her color is clearing up, her energy levels are off the chart, it is like a new girl.
The next of the updates on Caitlynn’s liver transplant begins on June 19th, when we became concerned. We were back early for an Ultrasound; the numbers were not where they needed to be. We had another appointment for a liver biopsy. There was concern her body was rejecting the liver.
Happy Birthday
June 22nd, Caitlynn’s birthday celebration began. Now 13, Caitlynn had a few close family members to stop by as to keep very low key. While the small party continued, we got a call around 6:30 regarding her biopsy results we had been wanting to hear. There was NO CLEAR SIGNS of rejection at this time. This was one more hurdle this awesome young fighter had overcome. Doctors dropped down her Steroid’s, she was on 50mg a day prior.
July 4, Caitlynn got her mind off of the hospital and doctor visits. She got the green light to go swimming. As of now, Caitlynn is up 2 lbs. and starting to grow, all positive stuff. We got to spend some time at Rodgers Park Baptist Church to celebrate the fourth. They held an event to help support the COTA fund helping Caitlynn. They had a dunk tank, bounce houses, food and more. It was a blast and Caitlynn was grinning ear to ear, it was just what she needed to raise her spirits. Huge thank you to the congregation, you were all a huge driving force during her recovery. It is a shame she had to become so tough this way, but we are thankful that she is.
More updates of Caitlynn’s liver transplant are soon coming as they progress in the future.