Ian Update- 5/28/24

We are possibly adding another set of hands inside our specialist pot.

Today, we took Ian to his PCP. He has had a cough since December, with no clear sign of any illness. He was tested for all the big stuff back then- RSV, Covid, and flu. Everything came back negative. This was the same time Ian had his breakthrough seizures, so the cough that was presumed to be a little cold wasn’t a priority at the time.

Fast forward to January/February when the seizures are under control- we begin to notice that Ian’s cough isn’t going away and is actually getting worse. By worse I mean he is coughing at night and it’s keeping him away. We had a day that was filled with back-to-back appointments, so we decided to add a stop to the PCP office about his cough since it’s keeping him up at night. In addition to the cough, Ian had also started to develop snoring around this time, which is something he has never done before.

His PCP recommended trying an antibiotic first, and then we would discuss next steps if that didn’t work. It actually did while he was on it, but the second he came off of it, Ian was right back to coughing at night.

I ended up making a second appointment, this time with our CRNP since we could see her faster than our usual PCP. She recommended doing a second trial of antibiotics because it sounded like the first trial did help him, and just maybe wasn’t quite enough to fight off the illness. I was hesitant, but I trust Ian’s care team, and agreed to give it a try. But just like the first trial, it seemed to help while he was on it, and then he was right back to coughing once he came off.

On Memorial Day, Ian woke up extremely tired. He slept the large majority of the morning, even after we had woken him, given him a bath, ate breakfast, and gave him his morning medicine. We knew the coughing fits at night were starting to catch up with him, so we made another appointment with the same CRNP again to be seen ASAP.

We discussed what we have been seeing- Ian coughing (mostly at night), snoring consistently, and these things combined keeping him up at night, or at the very least, not getting consistent sleep/sleeping through the night. So, as of right now, there’s a few different roads we have to travel down to see which one fits Ian best.

First, we are trying a nasal spray. If what Ian is having is allergy related, this should help it.

Come next week, if that doesn’t work, or isn’t working enough, we are to move onto an inhaler, but we have to give it to him that treatment through a mask. This would treat for more on the asthma side.

If neither of these things work, our next step is to move on to an ENT. There was mention of possibly needing to get Ian’s adenoids removed if they are the reason for his problems. I also want to explore the possibility of him having sleep apnea, but this would all be addressed under the ENT.

When Ian was first diagnosed with the brain tumors, I never imagined the number of specialists we would need to see due to different issues that just keep arising. And while this particular specialist isn’t necessarily caused by the tumors, it is another specialist to add to our already full plate.

Things often feel very overwhelming to the point I don’t want to deal with them. So, I kind of don’t. That tends to make things worse for myself and causes me to become more overwhelmed. Something I’ll probably need to discuss with my therapist next week on how to properly handle those situations when they arise.

But in the meantime, I’m staying afloat. We are surviving. Lord knows I’ll take this life over one without my baby any time. I’m reminded of that during the hardest moments. It is a lot to handle. It probably always will be. But there’s a lot to be grateful for, too.

I feel what I need to feel to let the negative emotions out, and I do what I need to do to let the positive emotions back in.

If you made it this far, I want to take a moment to thank you for reading up on my little warrior. And I ask that you pray for him. Pray we can figure out what this is and pray that we can all start to get some sleep. Especially Ian.