As much as we tried to avoid it, we just couldn’t manage to keep James out of the hospital. The last several weeks have been such a roller coaster. He would have a couple of bad days, then seem to get better. Then he’d take a step or two backwards, and then start to feel better. It was a cycle that just didn’t seem to end. Since Stacy was the one dealing with most of it, it was really starting to wear on her.
Halloween
But before we get to James’ illness and hospitalization, I wanted to post a pic of the Halloween costume that Stacy made for him. With James being sick for the past few weeks, I was surprised that she found the time—or the energy—to make him something.
As you might have been able to tell, the above pic was taken at school. It was one of the few days that he seemed well enough to go to school these past few weeks. I asked Stacy that if James was going to be “Super James” for Halloween, what was she going to be? “Super Mom, duh!” was her response. She really doesn’t need a costume to tell the world that she is Super Mom. I think everybody knows it. I know that I do.
Saturday, November 3rd
Alright, let me catch you up on James’ illness. On the morning of Saturday, November 3rd, James was what we call double breathing. He was taking 2 inhales for every exhale. He has done this in the past, so it wasn’t anything new for us, but this was the first time he had done it with this illness. In addition to the double breathing, he also had a high heart rate, and spiked a fever of 102. It was at that point that we decided to throw in the towel. It was time to take him to the Emergency Room.
They did their normal assessment and took a chest x-ray, which came back clear, which was good, because that meant that it wasn’t pneumonia. It was also bad because they didn’t know what was going on with him and decided to admit him to run more tests and figure it out.
After they got him settled into his hospital room, they went through another assessment to figure out what course of action they wanted to take. They did another x-ray, and this time it showed pneumonia. They also ran a blood panel which showed a high white blood count, which indicated that he was fighting an infection. Because the x-ray showed pneumonia, they believed that this was the infection causing the high white blood count.
James was put on high-flow oxygen to help boost his lungs and help with his breathing. They started him on IV fluids to keep him hydrated. We’ve learned by now that when James gets sick like this, his digestive system shuts down and he doesn’t tolerate his normal feeds. They also used the IV for steroids and antibiotics, both of which were used to kick the pneumonia out of his lungs. They also called in a respiratory therapist to start him on breathing treatments.
Sunday, November 4th
There wasn’t enough room for both Stacy and I to sleep comfortably in James’ hospital room, so I went home for the night. When I came back on Sunday, I stopped and picked up a little monkey stuffed animal for James. Its name is Coconut.
An ENT stopped by in the morning to check on James. He said the things looked fine in his nose and throat, but he thought we should get a CT scan of his sinus just to make sure there wasn’t anything there. He also recommended we talk with James’ regular ENT about Botox, which may help with the secretions.
They did start him on a small amount of his normal formula on Sunday afternoon to see if he would tolerate it, which he seemed to.
Blood culture came back positive for an infection, but they didn’t know what kind.
Monday, November 5th
They drew more blood for testing, and his white blood count was back to normal, but his CRP (C-Reactive Protein) was high. A high CRP level indicates that there is inflammation somewhere in the body, which may be due to an infection.
They bumped up his feeds a little bit and he was still tolerating them.
Stacy decided to try him off the high-flow oxygen Monday night and he did great.
Tuesday, November 6th
Tuesday morning when he woke up, he was still off oxygen, and managed to stay off oxygen all day.
They bumped up his feeds again, almost to the amount he normally gets, but it might have been too much for him to handle. His belly started to look a bit distended, which is a sign that his digestive system isn’t functioning fully.
Because he was doing so much better, they moved James from the PICU to the regular pediatric floor, and they started talking about sending him home in another day or so.
Another chest x-ray showed that there was still inflammation in the lungs. It also showed how bad James’ scoliosis is. It was a reminder for Stacy (and me) that we need to get better at making him wear his “turtle shell”. This is what we call his TLSO, or thoracic lumbar sacral orthosis. It’s worn around the torso to help keep the spine strait. In James’ case, it is to help keep his scoliosis from getting worse.
He got a CT scan of his nose and it showed pansinusitis in his sinuses, which is an infection or inflammation off the sinuses. The antibiotics that he was already taking will help with this.
A group of Stacy’s friends sent a get-well gift for James:
Wednesday, November 7th
On Wednesday he took a pretty big step backwards. He woke up horrible. His sats were low and was really congested. He was juicy with lots of secretions for a while, then he dried up; back to being juicy, and then dried up again.
He was doing so well on Tuesday that they were considering discharging him on Wednesday, but as bad as he was when he woke up Wednesday morning, they decided to keep him one more night.
Thursday, November 8th
He had a great night sleep Wednesday night and woke up looking and sounding so much better. The doctor on the floor that was overseeing James’ treatment felt comfortable enough to send him home, so we came home Thursday afternoon.
They sent him home with a prescription for a 10-day round of antibiotic so hopefully when that is done, James will be completely back to his normal self.
This Weekend
James was still doing good this weekend so maybe we’re finally done with this illness that we have been dealing with for the past several weeks. I hope I didn’t just jinx it. Please pray that James stays healthy.
Thanks to everyone that sent well wishes, called, texted, or left comments on James’ Facebook posts.
A final reminder that if you haven’t ordered a Rollin’ for James shirt for our fundraiser, your order needs to be in before November 15th. Thanks to everyone who has already placed their order. We can’t wait to see pics of your shirts.
https://www.3elove.com/pages/rollin-for-james-fundraiser
