Seriously?!?!?

Jon officially has the WORST luck when it comes to health issues. As it turns out, when you have ALS other normal medical problems don't stop. (This is from the email update I sent to family, so it may be more detailed than you are interested in! I decided not to edit, so this was his status as of Friday morning)

For the past few months, Jon has had intermittent stomach aches. They have lasted 2-3 hours and then he's been fine. He had a kidney stone a few weeks ago, and we assumed that explained the pain. He's had 2 more bouts of the pain since then.

Wednesday night he started hurting again. The pain was manageable through the night, but did continue into the morning. We still went to his ALS appointment, and he got increasingly uncomfortable throughout the day. They decided that they needed an internist to look at him, as the pain was clearly not ALS related so they made an appointment for him in urgent care. 

Around 2:00 the pain got intense, just as he was heading to urgent care. They were a bit slow, so I asked if the ER could deal with his pain better (imagine a lot of moaning and writhing...totally not Jon), and they did transfer him. After taking much too long getting the IV in, I asked them to just give him a shot in the meantime. They did and then got IV pain meds going as well. They diagnosed relatively quickly that he has sludge/stones/infection in his gallbladder...normal gallbladder problems for those who have them.

The trick is managing the gallbladder with the ALS. At the moment they are managing the pain meds with the fact that they depress his already weak diaphragm. So managing his pain is making his O2 fall. For now they seem to have found a good balance, but if his saturation drops below 90% consistently, they are discussing intubating him. The concern, of course, is that he would never come off. I will encourage them to let him feel a little more pain before that happens.

Surgery is scheduled for 2:00, but they are putting in a tube to drain the gallbladder, rather than remove it. I'm glad the surgeons (who of course know Jon) are being cautious. An otherwise healthy adult could handle simple complications, but again, they don't want Jon to end up on a ventilator already. The drain may actually solve the problem, but it will definitely make the surgery to remove the gallbladder safer if it is necessary in a few weeks. That and the antibiotics he is on to manage the infection.

When Jon had his feeding tube placed, recovery was definitely a little difficult for him. I am anticipating Jon being at the hospital through the weekend. Since he has a BiPap machine for breathing while he's laying down, they have him in the ICU, which I'm so grateful for. I think he is probably getting more attention because of that.

To be continued...