When I first stated this blog, I was trying to post every day or every couple of days. Then I realized that the posts were sometimes really short, so I switched over to weekly posts. Sometimes even those seem a bit short. I ended up not posting anything last week because there really not enough to post about. So this post will bring you up to speed on our lives over the past two weeks.
Let’s see. On Monday, October 31st there was an issue with James’ pulse ox. For some reason it wasn’t charging. We tried different power cords, but still nothing. Stacy put a call into home health that night and they said that would bring over a replacement as soon as possible. It didn’t show up until after 1 am. If James wasn’t so dependent on his pulse ox, we could have waited until a reasonable hour for it to be delivered, but it’s kind of important, especially now that we are coming into winter when James usually gets sick.
Fast forward a few days to November 6th, and that’s exactly what started happening. He was starting to show signs of getting sick. We were really hoping this wouldn’t be a repeat of the past two years when James wound up in the hospital with pneumonia after Thanksgiving. And it just so happened that we lost nursing care almost two weeks ago. We were notified in May that we might be losing it because James was staying healthy, so it wasn’t a total shock, but why did they have to take it away right before the time of year that James usually gets sick?
The following day, on November 7th, Stacy noticed what looked like yeast in his diaper. What the hell?! Can boys get yeast infections? We took him to the pediatrician on the 8th and the doc thinks it might be a reaction between the urine and the diapers…possibly a bad batch of diapers. He recommended getting a new box of diapers and see if it goes away. The doc thought the illness that James started fighting on the 6th was just a cold. He prescribed an antibiotic just in case it is something else.
On Wednesday, November 9th, James woke up very congested. Stacy put him on oxygen because he was double breathing. That is what we call it when he takes two inhales for every exhale. There’s probably another term for it, but that’s what we call it. At one point he was up to 3 liters of oxygen just to keep his sats up. This is how the morning went in Stacy’s own words:
“Well a great way to start out the day. 4am I got up to give meds, he is stuffy, I swear he had a gallon of gunk in there. Changed several diapers because sir poopy pants kept tooting! Around 4:40 gave another med, more suction then around 5:15 I figured I would vent him and of course his “juices” spilled out if the cup onto his bed! Changed sheets, suctioning and finally around 5:40 I put the oxygen on him because his sats were fine but he was taking double breaths. It is now almost 6 and I am finally going back to bed and hope Jeff gets up with him at 7:30.”
~ Stacy
Yes, I was up at 7:30 and let Stacy sleep a bit. We are a team. Why should she have all the fun? I took some sick time because we didn’t know how this was going to go and I’d rather be home if we needed to rush him to the ER. We had him off oxygen for a little bit to see if he could hold his sats up. Didn’t last long and ended up putting him back on oxygen…and we ran out of oxygen at around 7:30 pm. When James came home from the NICU, home health supplied us with six oxygen tanks. We never used that much so when we moved this summer, we asked home health switch it to four tanks. Maybe we should have kept the six tanks. We put a call into home health, but they wouldn’t be able to drop them off until the following morning. Fortunately, someone Stacy had met through our local special needs community saw Stacy’s post on Facebook about running out of oxygen and offered to bring a tank over, which we gladly accepted.
We were doing everything we could to keep him out of the hospital. Really the only thing that they would do in the hospital that we can’t do at home is IV fluids, and maybe an IV antibiotic. We tried to give him food (formula) here and there, but we’ve found that when he gets sick, his digestive system shuts down and it makes him more upset, which makes his respiratory distress worse. The same was true this time around, so we were giving him Pedialyte to keep him hydrated.
Thursday he finally started coming back around. He was down to .5 liter of oxygen…much better than the day before. His breathing was still off, though. It sounded like he had something stuck in his throat. Unfortunately, he doesn’t know how to cough so he can’t just cough it up, so it’s up to Stacy and I to keep trying to get it with suction. He does sneeze now and then, but even those weren’t enough to bring it up. Stacy also managed to get a little bit of food in him on Thursday which is another sign that he is feeling better.
Friday, Saturday, and today are much of the same. Still on a little bit of oxygen, but his heartrate is working its way down to normal levels. I don’t think I mentioned it previously, but when he gets sick, his heartrate is elevated. He just seems to get himself all worked up.
He’s not totally back to normal, but he’s getting there. Hopefully in the next couple of days he will be fully back to his normal self. And hopefully once he’s done with this illness, it means that we get to skip the post-Thanksgiving hospital stay this year.
