Shortly after writing my last post, Zack’s GI called and we decided it was time for him to be admitted. Jim and I do a pretty good job of keeping Zack safe here. However, the sheer volume of poop coming out of his ostomy was making everyone nervous. Total output by the end of the day was 3,995 ml bringing his total output over three days up to THREE GALLONS! This is what three gallons looks like:
That is a lot of poop. We suspected Zack’s sodium levels were lower than Tuesday’s Emergency Room visit and that was indeed the case. I was disappointed, because I thought that by getting fluids and correcting his electrolyte irregularities on Tuesday, we had “tanked” Zack up and that it would last for a few days. I was wrong. I learned that just because he was given fluids to get his electrolytes back into balance, fluids are lost volume for volume. This means that if you continue to lose fluid faster than they are replaced, your electrolytes will soon be out of whack again. And so they were…
When we arrived at the Emergency Room, Zachary’s extremities and bottom lip were purple. The doctors told us that if he had been lethargic they would have been very concerned. They were still not thrilled, but encouraged by Zack’s energy level. The purple extremity situation lasted throughout his admission. The doctors continued to be perplexed. I am happy to say that once his electrolytes were back in the normal range, the purple weirdness went away.
Zack’s body did another crazy thing. His output turned clear. That has never happened before. It has been like water often, but never clear. Z’s doctor told us that he believed there were probably some electrolyte pumps locked open because of his illness. Water in the body always follows the electrolytes. It does not take much for Zack’s gut to get into trouble and it takes longer than a regular gut to recover. I guess I needed to learn lots of new things this admission.
Zachary did extremely well with his IV placements on Tuesday and the first one for this admission. Sadly, that first one blew and when Zack learned he would need another one placed, angry badger made a dramatic comeback. A working IV was finally placed in the ER and we had to stop at X-ray on our way up to the ward. Zack was not happy. He unscrewed his IV line from his arm. When we got upstairs, the doctors wanted him attached to leads. Zack completely lost his mind then. I believe he scared the resident on duty that night. The doctors finally gave into his hysterics and said that because I was spending the night with him, they would allow him to keep the leads off. They also told him that meant that he would have to have his vitals taken more often.
I wish I could say that he calmed down then, but I cannot. By the time we got up to the ward it was 1:00 AM. There were sick patients sleeping in the rooms around us. Having a child losing their mind during the day is one thing, but at night it is even more upsetting. Zack did not want anything to do with the hospital. He told me that he hated everything about being there. I think it must be a bit like labor. After labor is over, you can forget all about the pain until the next time you are ready to give birth and then it all comes flooding back. I believe being sick, being tired, and being scared of all things hospital related got the best of our little fighter.
When the nurses asked Z to get into bed, he refused. He was still in full angry badger mode. I was in full sweating mode. It is NOT fun to see your child having an anxiety attack like that. Zack’s nurse happened to mention he was floating from the PICU for the night. That led me to ask about one of Zack’s most favorite nurses of all time while we ignored Z’s tantrum. When Z heard that his nurse knew our friend, Chris, he immediately calmed down and agreed to climb into bed. I am sure the entire ward rejoiced. I was afraid the morning would be just as awful, but when Z woke up, he declared that he was ready for a great day and that is just what he had.
I am happy to say that angry badger did not return for the rest of our visit. The next day was spent advancing Zack’s diet from clears back to a regular diet. One of our favorite GI doctors was on service and we were able to get his thoughts of Zack’s intestines. People continued to ponder Zack’s purpleness and Zack’s output came down to 2,400 ml. While that is still a lot, it is within the realm of Zack normal. Zack’s pediatrician checked in with us and we now have a plan to check labs when Zack’s output reaches 3,000 ml. It seems as though the CeraLyte helps us keep Z safe until we reach that level. I am so glad that there are people smart enough to invent products like CeraLyte and g-tubes. They have literally helped us save Zack’s life several times.
Zachary began bugging the staff about being discharged the next day. He was anxious to get home, because we had a water station to man for the Nathan Chris Baker Foundation’s Great 5K. Our family has helped with the water station for the last several years as a way to thank this organization for all of the things they did for our family when Zack was super sick. Zack is a master at perseverating and he had discharge on the brain. He eventually wore the doctors down and they agreed that we could manage well at home. While we were waiting for the final decision to be made, some special guests came to visit the kids on the ward. Zack was just a little bit excited.
The Foundation 4 Heroes sure now how to make a boy smile. Batman is his favorite super hero – as evidenced by his pillow case. You should check out their website and see all of the great things they do.
I am happy to report that Zack did make it home that day. He was able to help man the water station for the Great 5K race the next day. In addition, many of our friends rallied to help us as we were unsure if Zack would be discharged in time. We are grateful to all of those who helped us make sure the water station was up and running this year.
Zachary’s doctors are talking with their colleagues in the area to see if they have any ideas of how to help us slow Z’s output down. As his GI says, “We can’t keep doing this.” I agree. Zack is always just one bad illness away from disaster. The GI on service during Z’s admission said that if not for CeraLyte things would have been very bad. We are still waiting for an appointment in Boston with the Center for Advanced Intestinal Rehabilitation. I am not sure when that will happen, but I am grateful that Zack will be able to be seen by doctors who specialize in kids with crazy output.
As if all of this was not exciting enough, our son, Jake, graduated from the University of Maryland this week. Drew and Lindsey flew in from California and there was much rejoicing in the land. I am so thankful that Zack decided to be sick the week before graduation. Isn’t he such a thoughtful son?
Jake worked extremely hard so that he was able to graduate in three years. He also had the honor of being a Senior Marshall at graduation. Jake has had to sacrifice a lot while Zack has been sick. Being able to have our whole family here to see him graduate was extra special.
Hug your babies!