Matthew had a rough week last week! Sunday his vomiting rose to a new level, as did his unhappiness. The poor baby was just irritable all week long. He didn’t want to be held. He didn’t want to be put down. He was tired and wouldn’t sleep. By Wednesday, I noticed a significant decrease in the number of diapers I was changing and that very few of them looked wet at all. We needed to head into the hospital to re-do some of his lab work (to keep him up to date on the transplant list), so our super Dr V had us stop by to look him over. Everything looked fine and his labs didn’t show any signs of dehydration. We went home. That night I slept three and a half hours. The rest of the night I was trying to console a very unhappy Matthew. The next night I slept for one hour and only because Rusty held him for that hour. The next night, I slept for 40 minutes. Poor Matthew just kept crying. No amount of rocking or swaying or bouncing or swaddling would calm him. At 5 AM, I picked him up and noticed his hands were hot. After checking his temperature 4 times to confirm that I was taking it right, I woke Rusty up and told him that Matthew had a fever of 103. Of course we panicked. We’ve been told that fevers are dangerous. Poor Dr V got an early morning text and as we waited for her to respond we got ready to head to the hospital. Dr V suggested a one time dose of Tylenol (Tylenol is digested by the liver and we don’t want to irritate his liver) and to wait an hour to see what happens. So we did. His fever came down a degree in that hour. We waited until 8 for our pediatrician’s office to open and then Dr V called to set up an appointment for us to go in and get Matthew checked out. We went in at 9:10 and Matthew’s fever had already risen to 105. His nurse panicked and I quickly messaged Dr V, who again swooped in to keep everyone calm. She called the office, talked with the doctor, and they worked out a plan. In office tests were run for the flu and for Strep and Matthew was given a dose of Motrin. The tests came back positive for the flu and we were sent off to the ER at our favorite hospital. I spent the entire day in the ER. Matthew was so dehydrated that they had to push 300 ml of IV fluids through him before they were able to start the IV pump. His condition requires that multiple blood samples be taken to make sure that everything stays in check. For hours, he cried. Then finally he began to settle. And, as is typical of an ER, every time he settled someone would come in to check something or give him something. Around dinner time, he was admitted to the hospital and moved up to a room. For most of the day, his fever hovered between 101 and 102, but shortly before bed it finally broke. He stayed in the hospital until Sunday, but his fever never came back up and he continued to remain hydrated. The doctors knew of his vomiting problems and were hesitant to let him out of the hospital until they were sure that it wouldn’t cause him to become dehydrated again. Consequently, they started him on continuous feeds. It worked well for a while, but at 10 hours in he vomited. Rusty tells me it was ugly. The nurses were nervous. He apparently shot 6 feet out of the bed while lying down. But, since his numbers were all stable and Dr V approved, they let us go home.
So. Here is the miraculous part. During it all, during a week of diarrhea and increased vomiting and then a day of a fever, Matthew’s ammonia never rose above a normal level. In fact, the highest it got was in the 30’s. As if that wasn’t enough, Matthew hasn’t vomited one time since leaving the hospital.
God has blessed us time and time again. As we leave 2013 behind us, we have so many things to be grateful for.
For the pediatrician in his birth hospital that caught the first signs of Matthew’s elevated ammonia.
For the NICU nurse who worked her butt off for 8+ hours trying to pull him out of his ammonia induced coma and settle him safely into a medically induced coma
For Dr V and the DC team who collaborate to manage Matthew’s care
For the team of PICU nurses who ensured that he was under their watchful eye 24/7 for over 3 weeks.
For the many friends, family, and strangers who have given financial and spiritual support
For Matthew’s amazing sisters, who dote on him like he’s their little baby doll, who, when they wake up, ask first where Matthew is; who won’t go to bed without telling him good night and wishing him sweet dreams.
For 7 amazing months with Matthew, watching him grow and break boundaries, for 7 months to love him.
For getting through our first fever without any further damage to Matthew’s brain.
We look forward to 2014, to many more miracles, to a new liver and a chance at a long life for Matthew.