One Year Since Transplant!

A great patient for the April neuro eval

Potty-training!

Funny boys!

Carter turned 3 in June!

Home and happy!

Today was a special day for our family…it was one year ago that Carter received his liver transplant! Many people have emailed asking for updates on Carter the past several months, and we thought today was a good day to report on him.

Carter has been receiving CT scans every 6-8 weeks, and everything remains clear! We have had oncology check-ups every month and UCLA check-ups every other month. We continue to have blood draws once a month, which we are hoping will lessen now that we reached the year mark. His blood work (AFP, etc) and liver levels continue to remain great!

Although, it has not all been smooth sailing since our last blog. In March, Carter's white cell count was very low and his potassium was very high. We were going in for blood work weekly or more. Carter began developing a lot of anxiety for the blood draws. Right around that time, Carter seemed to develop an uncontrollable tick. It began with him blinking hard every few minutes, to blinking hard and jerking his head to the side every 30 seconds. The doctors originally said just keep an eye on it. By this time it was April and our family decided to go out of town for the first time since Carter was diagnosed. We went to Palm Desert, and after one day the tick was at its worst. We called CHOC and said we would need to be seen when we got back into town. Well, that night Carter got a fever. I told Matt to start driving to CHOC with Carter and I would call the doctors and let them know. The doctors thought Carter should go to the nearest ER if he got worse during the drive. Soon after that conversation, Carter vomited in the back seat. Matt went to Loma Linda ER around 1am. After several hours and much dialogue with CHOC, we were on the road leaving Loma Linda and being admitted to CHOC. During our few days at CHOC, Carter's fever went away (and the cause was unexplained) and he had a full neurological evaluation to rule out the cause of the tick (and everything was clear). Matt and I firmly believed (and the neurologists said it was very likely) that the blood draw anxiety had brought on a tick. We insisted on cutting back on blood draws a bit, and fortunately his white count started trending back up during this time as well. And with medication adjustments (and diet restrictions), his potassium went back down...and after a few weeks the tick went away just as quickly as it appeared.

By May and June, we were starting to venture out a bit more and hopeful to have a normal and fun summer. On June 30th, Carter began complaining of severe stomach pains. We went to CHOC for an ultrasound and x-ray and they weren't able to see anything. That night, Carter vomited and the pains became more frequent and more intense. We were admitted to CHOC the next day. We were trying to manage Carter's pain, while the doctors were trying to figure out what was going on. A surgeon finally reviewed the imaging and thought they may have seen an obstruction. They ordered an upper GI and had x-rays done hourly to see if the contrast dye was moving through his system. Carter had an NG tube put in to suction everything out of his stomach. After three days at CHOC, they believed Carter may have a bowel obstruction and the liver transplant team at UCLA was in charge of him from a surgical standpoint. We were ambulanced to UCLA, and after being admitted Carter had to endure tons of tests and imaging again. It is the worst feeling to see your child in terrible pain and have him poked and blood drawn every couple hours. After a couple days of this (and bruises up and down Carter's body from veins collapsing), it was decided to put in a picc line for them to draw blood/administer meds and IV nutrition. The surgeons continued to order x-rays and watch the contrast dye not moving. On the afternoon of Fourth of July (a holiday for the hospital), the surgeons decided Carter needed surgery right away. Carter's amazing liver transplant surgeon had been updated and decided to drive in and do Carter's surgery. We were thrilled and very appreciative.

When they opened Carter up they realized scar tissue from his transplant surgery had created a loop and it was squeezing his lower intestines, appendix and part of his colon. Every time his bowels were contracting (which was about every 15-20 minutes, Carter was in excruciating pain. The surgeons were amazed that he was even playful part of the time during those 6 days prior to surgery. They said he masks a lot of pain and they will have to be more cautious of this in the future...he's one tough dude! This was the best case scenario for what the surgeons had prepared us for prior to surgery. They cut back the scar tissue, removed his appendix and saw that his bowels were still healthy and no bowel resection was necessary (sometimes bowel can die off after being obstructed too long- this was not the case). The doctors explained bowels lay dormant for as many days after surgery as they had been obstructed. So, for six days after surgery they just listened to Carter's tummy waiting for bowels sounds. Sure enough, on Day 6 they thought they had heard something and Carter yelled out, "I tooted!" The doctors were so happy. Then, we had to wait another day for a bowel movement (which it had been about 10 days since his last one). Finally, Carter got to begin having clear foods, then soft foods and finally solids. He hadn't eaten in about 11 days and was thrilled. After surgery, Carter's pain continued for over a week while his bowels were contracting back down to size (they had ballooned out at the blockage point). We were at UCLA for about two weeks and it was so nice when the pain finally stopped after a couple days of being home. We're hoping this will be our biggest hiccup along the way.

Carter's incision has finally healed. Last week, we started swimming with him every day. He didn't remember ever swimming before and was terrified. Now, he can't get enough of it. We're working on potty-training and he's doing great. He starts preschool next month, so we're hoping he will have mastered it...but we were trying to give the poor guy a break!

Bennett just learned to ride without training wheels on his bike today! We're so proud of him (and thanks to a lot of persistence and patience on Matt’s part!)! And Bennett starts kindergarten next month! Davis turns one in a month and took his first steps this week! So, all the Kipp boys are doing fantastic now. We couldn't be more proud!! HAPPY SUMMER EVERYONE!!