With so much going on to prepare for the fundraiser we had a few weeks ago, some much needed recovery time after the event, and just life in general, I’ve fallen a bit behind on blog posts. I am going to try to catch up on the last couple of weeks this weekend. The original plan was to just write one long post to cover everything but decided to write about Easter weekend separately. I will write another post after this one that covers everything else…probably tomorrow.
Before I talk about our Easter weekend, I think this is a good time to remind you to follow Fans of James on Facebook if you’re not following him already. There will be times, like now, when life happens, and I won’t be able to find the time to sit down and write blog posts. If you want the most up to date information on James, you’ll find it there first. Even if you’re not on Facebook, you shouldn’t need an account to view his page, so you could just bookmark his page in your browser or come here and click on the Facebook link on the upper right-hand side of this website.
Okay, so let’s talk about Easter. As we normally do for Easter, we went up to Lake Lawn for the weekend, leaving on Friday afternoon and coming back Sunday morning. He was a bit gunky the weekend before so there was some concern that he was getting sick again, but he seemed much better by mid-week so we didn’t think there would be a problem travelling with him. It turned out that we were wrong.
He seemed fine on the drive up to Wisconsin on Friday and on Saturday morning when we walked down to have breakfast at one of the restaurants. On the way back to the room after breakfast we noticed that there were not many people in the pool, so we figured it was a good time to take James swimming.
Now, if you’re thinking that we shouldn’t have gone swimming right after eating, don’t worry. James is on a different eating schedule and had his breakfast about two hours before we did. And by the time we walked back to the room after breakfast, got our swimsuits on, and got back to the pool, it had been more than 30 minutes, so we were good to go swimming, too.
Stacy’s parents bought James the neck ring that he’s wearing in the above picture a couple of Christmases ago and it still works out well for him. If you’re interested, they can be found here:
James seemed fine prior to going swimming, but maybe he wasn’t. Shortly after we got back to the room to give him some belly time to drain before his next feed his sats dropped and his heart rate jumped.
We put him on some oxygen—we always travel with a tank—and suctioned as much as we could to try to get his sats to come back up and his heartrate to come back down. At the same exact time, Stacy and I turned to each other and asked, “Is this Easter 2013 all over again?” We were having a bit of déjà vu. Last year we had a similar situation and ended up packing up and Saturday night and rushing home.
As we watched the numbers on his pulse ox, they weren’t getting any better. Should we start packing up to head home, or should we take him to the hospital that was a little way down the road from the hotel? If we take him to the hospital, there is a chance that they would want to admit him and then what?
When James is in the hospital back home, Stacy usually stays with him and sleeps in his room, and I go home to sleep. I really couldn’t go home to sleep, and then come back. I would have to either sleep in the car or get a hotel room. And we didn’t know how long he would be in the hospital, and what kind of care he would receive. If we were able to get him home, we could take him to our hospital and know that he would receive top notch care. Such a dilemma.
After discussing our options, and weighing the pros and cons of each, we decided to try the hospital. One of the hard things about having a child with so many medical issues is taking him to a medical facility that doesn’t know him. You know how when you go to a new doctor, and they ask about your medical history? James has been through so much medically; it seems like it takes forever to go through his medical history with the hospital staff.
This is where the medical binder comes in handy. Unfortunately, we don’t normally travel with it. We only bring the full binder when we know we’re taking him to the hospital or when we’re going to see a new doctor. But there is an important piece of that binder that Stacy always has with her when she is traveling with James. There is a sheet of paper that she keeps in one of those clear protective covers that has the phone numbers of all of James’ doctors and all of his medications with dosages. So, when they ask about his primary doctor, or what medications he is taking, all she has to do is hand them that sheet of paper. I should figure out how to share that here so that it can be available for other parents that may be able to use it. I’ll put that on my to-do list.
This was a small hospital, and it didn’t take them that long to get an x-ray of James’ chest. Unfortunately, it showed that James had pneumonia in the right lung. Of course, this meant that they wanted to admit him. We asked the ER doctor to call the pediatrician to see what he thought and if there was another option other than being admitted to a hospital over an hour away from home.
After a lengthy conversation with our pediatrician, he came back and told us the plan. He was going to send us home with two new antibiotics, see how he does and see the pediatrician on Monday. If James gets worse, we will need to go to our local hospital and have a trach put in.
We went back to the hotel, packed up the car, and were back home Saturday afternoon. That double dose of antibiotics must have done the trick, because his numbers looked awesome by Sunday morning. Remember his pulse ox numbers from the pic above? These were his numbers Sunday morning:
The top number is his sats. He went from 87 to 96, which is fantastic. His heart rate was 178, and the next morning it was down to 107. He was like a totally different kid than he was the day before. Stacy called the pediatrician Sunday afternoon with an update, and he said that since he was doing so much better that he didn’t need to see him on Monday.
That was our Easter weekend. It is never dull with this kid.
Oh, and in case you’re wonder how he’s doing now…he is just fine. He no longer needed oxygen on Monday, and is still doing good.
