If you or someone you know has ever considered donating a million dollars to us, now would be the time to do it. I am only partially kidding here. I would love to be able to be home more, so Stacy doesn’t have to do all of this alone. This past week or so has been extremely emotionally draining on her. More than usual. Unfortunately, I have to work to cover our monthly expenses and provide health insurance for the family, which is where that million dollars would come in handy.
If you haven’t read yesterday’s post about our Galena trip, I recommend you do so, especially the part after the last picture. This is the Cliff Notes version. We took a short family trip to Galena, Illinois, leaving on Thursday the 16th and planned to return home that Sunday afternoon.
Stacy got a call on that Friday afternoon from the school district informing us that James’ one-on-one nurse was let go and that a new nurse would be starting on Monday. This nurse had become like a second mom to James. She was practically family. Finding out that they let her go came as a complete shock. The best reason they could come up with as to why they took her away from James is because she was texting too much. We had gotten authorization from the district to allow the nurse and Stacy to text throughout the day, so we knew that was total BS.
Stacy and the nurse had a lengthy and emotional conversation Friday afternoon after we got the news, and we think that James picked up on the vibes that Stacy was giving off during that phone call. The following morning, he started having respiratory issues. We tried everything we could to bring him back around, but nothing seemed to work. Saturday night we made the decision that it was time to get him home. Instead of leaving Sunday morning as we had planned, we packed up late Saturday night and hit the road shortly after midnight and got home at around 3 am.
I think that pretty much sums up how our trip ended, but if you have time, please go back and read the end of the previous post. Now that we’re caught up to last Sunday, let’s talk about how this week went.
While James usually travels better at night when he’s sleeping, it does kind of bite us in the ass the next morning. Our lives revolve around James’ schedule, and when he gets his first meal at 6 am, one of us has to be up to get him out of bed and ready to eat. Stacy did manage to get a little bit of a nap in on the way home, but I don’t think it helped much. This is one of the reasons I would like to be home more. Saturday we took turns napping and tending to James. Sunday was pretty much a repeat of Saturday. James was still having respiratory issues, although he did seem a little bit better.
We had a palliative nurse stop by on Monday morning to assess James. She said that his left lung sounded diminished, and that we should take him to get an x-ray to see if he has pneumonia again. Stacy called the pediatrician while the nurse was there, and he agreed that we should get him an x-ray. He said that we could either bring him to his office or take him to our local ER.
Stacy let out this big sigh because she knew that if we took him to the ER and it was pneumonia, James would automatically be admitted. And travelling to the pediatrician was just too far. The nurse had another idea but had to make some phone calls first. We didn’t need to take James anywhere for an x-ray after all. An x-ray came to us. I am not kidding. Check it out:
For those of you who have had an x-ray or been in the room while an x-ray was taken, you may notice that something is missing in the pictures. Neither Stacy nor the x-ray technician is wearing a lead vest. He told us that this x-ray wasn’t as powerful as the ones used in the hospital, but that didn’t make me feel any better. Hopefully we won’t have any weird abnormalities from radiation later in life. James has had so many x-rays in his short life, and he seems to be fine, so maybe we will be too. The results of the x-ray came back a couple of hours later and James didn’t have pneumonia, thank God. That was good news, but we still didn’t know why James was having breathing issues. If it wasn’t pneumonia, could it be digestion issues again? That’s the way we decided to treat it.
Side note: I realize I say “we” a lot, when in all reality it’s usually Stacy. She is the James expert. I still like to think that I am part of the team, but I am more of the support part. I would like to be more involved in the day-to-day stuff, but I need to work. We need the insurance. If there was a way that I could be home more, be more involved, and still be able to support our family, I would jump at the chance.
Anyway, Stacy decided to start giving James nebs (breathing treatments) every three hours, adding additional percussion vest treatments, and splitting his feeds between Pedialyte and his normal formula. Like I said, Stacy is the James expert; her course of treatment seemed to have worked. The nurse came by on Wednesday to reassess James and his left lung no longer sounded diminished. She could hear it moving air. He wasn’t completely back to normal, but at least he was on the right path. He’s still been needing some oxygen here and there to keep his sats up, but he’s doing so much better than he was last weekend.
In addition to dealing with everything going on with James’ health this week, Stacy has been talking with parent advocates, lawyers, and other moms about the school district’s firing of his one-on-one nurse. Just to get input from others to see if there is anything we can do to fight this. So going back to the first paragraph, this week has been pretty taxing on Stacy. I just really wish there was something more that I could do to help out.
Before I end this post, I wanted to say thank you to all of you who have reached out to Stacy this week…or at least attempted to. It’s been a rough week for her mentally and emotionally and she appreciates all of your kind words and notes. If she hasn’t responded to you yet, please don’t take it personally.
