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I have some good news and some bad news. I would ask which news you wanted to hear first, but that doesn’t really work on a blog, does it? If someone asks me that question, I usually go for the bad news first to get it out of the way, so that’s where I’ll start.
You know how James had a few rough days last week? Well, he seemed to be better later in the week, but I guess that was just the calm before the storm. This week was pretty rough for him. Monday morning, he woke up with a high heart rate over 160 beats per minute and sats in the low 90s. We have learned that the combination of high heart rate and low sats is the sign that he is not feeling well. At one point during the day his heart rate got up to 200 beats per minute and sats dropped to the low 70s. Not good numbers.
I don’t know if this is a good thing or a bad thing, but Stacy is becoming a pro at handling this. It’s obviously good that she knows what to do, but it’s also bad that she knows what to do because it seems to happen a bit too often. She put him on oxygen and had him on his belly for a good chunk of the day to help drain his secretions. This helped a little bit, but not as good as she hoped so she eventually brought out the percussion vest. The percussion vest uses pulses of air to help dislodge any mucus from the airway so that we can suction it out.
The white thing on James’ cheek is just a piece of gauze. We sometimes put this under the oxygen nasal canula tubing so that the tubing doesn’t leave a mark on his cheek from laying on it.
Tuesday morning, he woke up with a heart rate around 145 beats per minute and was satting around 90, which was a little bit of an improvement. She gave him a vest treatment first thing in the morning and tried to keep him hydrated with Pedialyte throughout the day. By mid-afternoon his heart rate was down to 116 beats per minute and sats were in the mid-90s. Much better numbers! Unfortunately, those numbers were short lived. Tuesday night his heart rate was back up, his sats were back down, and now he had a fever.
I think the stress of James being sick took its toll on Stacy’s immune system, because she was not feeling well either when she woke up on Wednesday morning. I decided to take the day off from work to let her get some rest while I took care of James. Late morning James’ breathing started to sound a bit wheezy, which is definitely not normal for James. We started doing breathing treatments, and decided it was time to call palliative care to have a nurse stop by and look him over.
When the nurse got there, she said she could hear him wheezing from across the room. The nurse called the pediatrician who then told us to call the pulmonologist to get a prescription for Prednisone, which is a steroid used to treat pneumonia. The pediatrician also gave us a choice of either going to see him on Thursday or taking James to the pulmonologist. It made more sense to take James to the pulmonologist. Her office was closer, and because he was obviously having some respiratory issues, the pulmonologist would have a better idea of what course of treatment to use.
The pulmonologist checked his ears, nose, throat, and listened to his lungs. She said she didn’t hear much wheezing, but his lungs sounded diminished. She sent us over to the hospital for a chest x-ray and a blood draw. The results came back showing early stages of pneumonia and some sort of infection. They are assuming it’s a viral infection, because he was already on an antibiotic and still got an infection.
This is something that we have learned: antibiotics are used to treat bacterial infections, not viral infections. Even though they thought it was a viral infection, because he was already on an antibiotic, the pediatrician decided to start James on a new antibiotic just to cover all of our bases. The pulmonologist also recommended that we give James breathing treatments every three hours.
We think we’re doing everything we can do, but he’s still feeling and looking pretty bad. We know it will take a little bit of time for the steroid and antibiotics to kick in, but we just feel so helpless, you know? This poor guy. Thank you for all of your prayers and comments on his Facebook page. We read some of your comments to him so that he knows how much his fans are rooting for him to make a speedy recovery.
We are getting a little bit worried that he won’t be able to make it to the fundraiser next Sunday. I know that should be the least of our worries right now, but we are really hoping that he can make it. Keep those prayers coming.
Fundraiser News
Okay, so now that we got the bad news out of the way, let’s share some good news. A couple of weeks ago we were interviewed by a reporter from a local newspaper for an article he wanted to write about our fundraiser. We thought the article would be in the community section or some other section deep in the paper somewhere. Nope. We made the front page!
We were totally not expecting this! We had no idea until a friend of Stacy’s sent her a message. I immediately ran out to buy a few copies…one for us, one for Stacy’s parents, and one for my parents. Here is a link to the article online:
https://www.dailyherald.com/article/20140330/news/140339957/
Here’s a funny story. This morning we received an online donation, which included the donors name and address. We were assuming he had just read the above article. Stacy glanced at the address, and then did a double-take. The address was on our block; it was a neighbor down the street that we had never met. We were planning on sending out Thank You cards to all donors that we have an address for after the fundraiser was over, but Stacy decided to hand deliver a Thank You card to this donor in person this morning. I wish I could have seen the look on his face. Could you imagine making a donation to somebody you don’t know and then having somebody show up at your door within an hour to personally say thank you?
Here are a couple of other articles that were written about us and our fundraiser:
https://parkridge.suntimes.com/news/rolling-NIL-04032014:article
With all of this publicity, we’re starting to wonder if the venue is going to be big enough. I guess it’s a little bit too late to worry about that now. Besides, I think we have something bigger to worry about. With the fundraiser a week away, we need to focus all of our worries on getting James better. Please continue to say prayers for him. Hopefully he will bounce back from this and we will be able to make it to the event. We hope to see many of you there.
