"Your son has a massive liver tumor"
On Thursday, August 25, our older boys were hitting golf balls in the field and our youngest son, Jairden, was shagging balls for them. J was accidentally hit in the stomach with a club. He seemed fine at first but with in a matter of minutes he was throwing up, the color was gone from his face, his lips were white, and his eyes were starting to flutter.
We rushed him to the local ER where they did a CT scan and saw bleeding in his abdomen. We were brought by life flight to Children's Hospital in Minneapolis and had two more CTs early Friday morning. The results: there was a bleed but the bleeding was from the softball size tumor hanging off of his liver. His kidneys had been pushed so that they were smashed up against his spine, his bladder and spleen were smashed together on one side and his liver was pushed to the other side and twisted at a funny angle. The rest of his abdominal cavity was filled with this tumor.
We had to wait until Tuesday to do surgery to remove the tumor. It was a long wait for a little boy that was used to being outside and playing all of the time. In order to keep tabs on the bleeding he had to have his hematocit levels checked every twelve hours and his potassium/chloride checked every six. As any two year old, he didn't like being poked but sat perfectly still when they were doing it. When they checked his vitals he would lift his arm for the thermometer and hold out his leg for the blood pressure cuff. He wasn't sedated for any of his CT scans either. He had an IV the whole time but still gave us plenty of time to make it to the bathroom. The nurses were all very impressed at his helpfulness and the fact that he was potty trained.
The surgery on Tuesday couldn't have gone any smoother, they were able to get all of the tumor and clean out all the bad blood. Now we had to wait for pathology to come back. We knew before surgery that his tumor was most likely a hepatoblastoma, but need the tests to affirm it.
Wednesday was a very rough day. After surgery they left him of a respirator and sedated so that he could have some time to heal. He did great with waking up and getting the tube out but was very anxious the rest of the day. He had a feeding tube in his nose which was driving him absolutely bonkers. (Your stomach doesn't stop producing acid but the narcotics stop you bowels from working so the acid pools in your stomach. They had wanted to give him zantac but I wasn't okay with changing the pH and function of his stomach acid in any way. The only other option, a medication to simply coated his stomach, had to be delivered via feeding tube.)
We had a hard time getting on top of his pain. They finally increased his baseline levels and that helped a ton. They had talked about giving him an anti anxiety med but I wasn't for that either. He tried drinking some water and threw all of that back up along with all the crap that he was trying to cough up from his lungs. Getting him to cough was very hard too! Try talking a toddler with a four inch incision across his belly into coughing to bring up the mucus in his lungs.
He didn't sleep for about 36 hours after surgery even after we calmed his down. That night I slept with him and had pretty much pasted out from exhaustion. While I was sleeping the night nurse gave him he anti anxiety meds without my permission, I was NOT happy and it didn't help at all.
He has the most amazing massage therapists, Candace and Karen. One of them came everyday we stayed in the PICU and did cranial work, healing touch, and some massage. Late Thursday afternoon, Karen came down and told him a story and did healing touch, smoothing out the magnetic field around him. His dad read him a story and he fell asleep for the first time since his respirator tube was taking out on Wednesday morning. When he woke up, I smiled at him and said "Hey baby" and he smiled back at me with the most beautiful smile ever. It took everything I had not to cry, I didn't want him to think I was upset. He hadn't really smiled since the accident, he was just to confused and perplexed at what was going on.
He continued to improve and late Friday afternoon we were moved out of the PICU up to 7th floor. Sunday night we were able to come home. Our trip home is going to be rather short lived. We have to go back on Thursday to figure out what our exact chemo plan is and to start chemo. We will be there at least two day and then if we are okay we can go home.