Another hospital admission :(

"I don't feel sick!"

So, this weekend brought Benjamin his second hospital admission. On Friday, he started having diarrhea and the threw up a couple of times. We called the pediatrician and they said to watch him overnight and if he got worse, they would see him the next morning. The next morning, he spiked a fever and threw up again and had more diarrhea. So, we brought him in to the pediatrician. He had lost 8 oz since Wednesday when he had been there. The dr said he was right in the cusp of should we admit him or not. She let us go home, but said if he had an uncontrollable fever, more vomiting or more than 1 diarrhea an hour, they would want him in the er. Well, we got home and 30 min later he threw up and had 3 diapers in 45 min. So, I called the dr back and asked if we should go to Lurie Children's or Edward in Naperville. Because of his history and some slight anemia, she wanted him at Lurie so cardiology could follow him.

So, off we went to Lurie. We all went together for the 2 hour drive. We got to the er at 5 pm on Saturday, and they did bloodwork, got an Iv started with some potassium chloride in it. And then they got us a room on ccu. Luckily he was not serious enough for cicu. the nurse he had the first night was one of his picu nurses before he had his transplant. She remembered him and told me how good he looked compared to back then. Even with being sick, he looked really good. They got him all settled in and also hooked up some normal saline and a big dose of antibiotics, just in case whatever it was was bacterial in nature. By Sunday evening Ben was starting to look better. he threw up once that morning. Nothing after that. he did have a pretty rough night Sunday night. He got maybe 3 hours sleep. Between nurses checking vitals, waking up a lot to eat, doctors coming in, lab techs coming early for blood, he just couldn't settle down for very long. So, he was pretty crabby the next day.

Monday, the dr came in at 7 am and said the nurse could turn off the fluids to see how he did without it and if he could stay hydrated on his own, We could go home. The nurse on that day was another nurse he had had many times in the picu, before and post transplant. She remembered him and gave me a big hug. She was also so impressed with how well he is doing. Benjamin still had some diarrhea Monday, but no vomiting and no fever, so they let us go home. He was taking in more than was going out, so they felt the risk of dehydration was less. He had some follow up labs today and has an appt with the pediatrician tomorrow. As well as his second vaccine, which the drs have all said would be safe to get as long as he doesn't have a fever. Then he has a cardiology appt 9/12.

I hate that any little sickness is so much harder on him. It makes me want to put him in a bubble and never leave the house. That is unrealistic though. He needs to live a life. But, what's will be requesting, (especially as we come in to cold and flu season) is that anyone who is going to be around Benjamin, be fully vaccinated (to the extent that you are medically able) Especially against pertussis, the flu and pneumonia. These diseases would be the worst for him to get. And since there is a pertussis epidemic going on, (in many of our surrounding counties as well as our own) we need to do what we can to keep him safe. Pertussis has the potential to be deadly for any baby under 12 months, for Ben it is much more likely to be lethal since he doesn't have the immune system to fight it off. It took him a month to get over a simple cold. We are also asking that anyone who has been sick please wait at least 5 days after you are well before visiting. I know you all love him and want to keep him as safe as possible. We want him to live a normal life, but at the same time be healthy too. I am sure everyone who has seen us through all of this will understand and know that this is how we can best keep him healthy to grow up in to a young man who I am sure is destined for great things. :)

So, Benjamin has had his first post-transplant emergency admission now. On Monday, I thought he was coming down with a little cold, but I wanted to be sure, so we went to the pediatrician. She said everything else checked out and it was just a cold, call or come back in if he worsens. So, we went home. Later that night, he was very restless in his sleep. Around 3 am he woke up and was whining. He felt a little warm, so I took his temp. It was 100.4 at that point. I also listened to his heart. He was at around 130 (his norm is 100-105). And, he was not very active at all, so it's not like he was being active and getting his HR up. So, I called the on call cardiologist. While I was on hold waiting, he had some diarrhea.

The cardiologist got on the phone and said that because of all of his symptoms and especially  the fever combined with the higher heart rate and the fact that he is, obviously, on immunosuppressants, she wanted him in the hospital for observation. So, off we went to Children's, at 4 am :( We got there about 5 am and got brought back to the ER right away. We settled in. They started an IV of Potassium Chloride and ran bunches of tests. Xray, labs, ekg, etc. The cardiologist came in and talked to me. She said she was keeping him for at least 24 hours. More if any of his tests came back not so great. So, we got a room in the CCU. I had not slept really at all the night before or that day. So, I was exhausted!

At around 4 they had taken his temp again and it was 100.8. They gave him some time and hoped it would come down on it's own, which it did around 5:30. So, that was good. Benjamin looked pretty miserable most of the day until around 7 pm. Then he started getting playful. The cardiologist came in and was glad to see him looking happier. He told us that if he continued to look good through the night, he would let us go the next day. Ben was a rockstar all night. He kept his heart rate under 120 through the night and under 130 through the day. Only minor temp elevations. So, since his heart was able to tolerate the temp elevation, the cardiologist told us we didn't have to call in unless his temp was over 101, or his resting heart rate got to over 130, or his active heart rate got over 140, or he started having trouble breathing or was lethargic or showing signs of dehydration.

So, we got out of the CCU around 1 pm yesterday. He has been looking pretty good today. No fevers or vomiting of diarrhea. He vomited twice and had a really bad diarrhea last night. He just is REALLY congested and coughing quite a bit today. We do have to hold his aspirin until at least tomorrow. If he has any fever tomorrow, we will hold it another day. The reason is that when you give a baby or child aspirin while they have a fever, there is a risk for Rheyes syndrome (sp?). So, the benefit does not outweigh the risk at this point. We will start it up again when he is fever free. He just started eating some solid food again, today at lunch. Yo baby yogurt for lunch (I figured it would help the diarrhea ) and a homemade squash applesauce combo for dinner. He tolerated them well and really enjoyed both. We have to follow up with our pediatrician on Saturday and labs next Friday, but otherwise, they said he did well for his first cold.