We left off the last update that Crue was admitted into TCH after receiving the news that liver was not a good size match and Crue was waiting to receive a central port for TPN feeding. He did have the TPN port put it a day later than expected on 2/25/25. He had to stay a few days in order to make sure everything was going to be okay. They were starting to get him discharge on the Friday but there was an issue with the insurance company approving the home TPN supplies which kept him there over the weekend to resolve on Monday. What we felt was an inconvenience turn into a blessing because the Saturday evening Crue begin to run a fever. Sunday the fever got worse, so they ran blood work to test for infection and start an antibiotic for in case an infection was going on. It turned out that he somehow contracted a strep bacterial infection in his new central point. They kept him there for another 7 days for antibiotic treatment. They thankfully caught it quick enough that the infection did not show up in his bloodwork since the Sunday. The transplant dry run actually turned into an 18 day hospital stay after it was all said and done! But his PELD score increased from 33 to 35 due to now being on TPN feeding.
Once Crue returned home on 3/10/25 he was doing excellent with his TPN while also still taking his normal formula bottles and beginning to really grow an appetite for baby food by mouth. He enjoys his chicken and beef, apple sauce and bananas. As many of you may have seen in his videos he did not like green beans and peaches! See his peaches video here https://www.tiktok.com/t/ZT2oFbhmN
On 3/24/25 had a checkup appointment in Houston. The appointment went great and the doctors when really happy with his weight gain. When Crue started TPN on 2/25/25 he weighed nearly 19.3 lbs. At the checkup he weighted 22 lbs. He gained nearly 3 lbs. in a month since the start of TPN. They told us he hit a major milestone of 22 lbs. pre-transplant that they stress as a major goal weight to help create a great recovery post-transplant. Crue is now in the 90th percentile in both his weight and height for his age!
On 3/31/25 Crue somehow managed to pull his TPN central port out of his chest approximately 1″ causing a hospitalization at CHNO. He managed to pull it out enough that they decided that he had to go into surgery the next day to replace his central port catheter with a new one. This was a little scary because with a central port the most concerning issue is getting an infection at the port and if the entire catheter were to come out the vein it could possibly cause internal bleeding. By the next morning and him fighting being poked for bloodwork three times and then poked for IV four times, his port catheter came out further and began to leak fluid out and was no longer operable. They had to move his surgery time earlier to repair port ASAP. Once in surgery the doctor told us that the catheter ended up coming completely out the vein but there was no bleeding, and they were able to go right back into the same hole in the vein with the new catheter. Crue was discharged to go home that afternoon after a quick smooth recovery from the surgery. Crue is now up to 22.5 lbs. and still gaining and in the 92nd percentile.
Besides some minor hiccups Crue is doing great under the circumstances. His weight gain is great and he’s hitting all his milestone in time. He’s on the verge of crawling ever soon and loves scooting around in his walker. He now has six teeth and has another about to break the gum!
For now, we just sit back and wait for another donor phone call. This week marks six weeks since his last call. The doctors have told us that’s not unusual for us it makes us very anxious know that next call could be at any moment now!
We would like to thank everyone who has contributed to Crue and want to let you know how much we appreciate you all, not only for the contribution but the overwhelming amount of support we receive as a family and the amount of you out there praying for Crue. It’s very touching for us as a family, Thank You!
Everyone can follow Crue on Facebook @ COTA for Crue and watch his daily videos on Tik Tok @sheli.hotard . We hope to continue the COTA momentum. All donations to COTA in honor of Crue assist with his lifetime of transplant related expenses. Thank you so much for your generosity in helping Baby Crue! Contribution Form #CruesCrew