September 17, 2017

Feeling better!

He's feeling a lot better, was able to urinate, and ate dinner and seems to be holding it down!

We're not sure how long he'll be here, but we'll probably find out in the morning after PFT's. They will test his potassium and electrolytes periodically through the night to make sure they stay stable.

Cystic Fibrosis can be hard on little sisters too... 


So, here we are at the ER. While we've been here, his symptoms improved over a few hours. They did an x-ray and saw his lungs are slightly better than they were last week. 

His sodium levels were pretty good. Unfortunately his potassium was low, and they have started him on IV fluids with another bag of potassium. They have decided to admit him so they can continue to administer potassium. They have him hooked up to a heart monitor. The doctor said with his potassium so low, if we took him home and his levels stayed low, he could go into cardiac arrest. At this point, I don't know why it's so low. The only answer the doctor could give us was it might be from the vomiting. 

The potassium burns going through his iv. He was in a lot of pain and wanted them to stop it. The nurse brought in cold and heat packs to help. They also are running additional fluids through his IV to help dilute it. 

New Symptoms

He is still sweating profusely but shivering and cold. Tested blood glucose and it was 130 which is good I think, since he's had very little to eat. He's started to say his vision is blurry at a distance. He said his heart is pounding hard, and is weak to stand. His finger tips are numb. We are all a little scared at that right now. Called the CF doctor on call again but considering taking him to the ER. 

Nausea and reflux

CF is such a catch 22 sometimes. Tuesday, Azer started antibiotics to clear his lung infection that was bad enough to cause shoulder pain when he took a breath in. Now, this same antibiotic that is basically saving his lungs has caused him to lose 5 lbs in 5 days. That's a pound a day. Since he's gotten sick a few weeks ago, he's lost almost 10 lbs. He's almost the same weight he was a year ago. In an instant, all the weight gain we fight to put on and maintain is gone.

For the past 3 days, Azer has been experiencing nausea and reflux every time he coughs. Yesterday, he had a baseball game, and after we went out to lunch to celebrate and he wasn't able to eat much at all. He was able to drink two bottles of Gatorade and keep it down, but he felt so exhausted and weak by the evening. We couldn't finish his breathing treatment last night because every time he coughed with any force, he felt his stomach contents coming up. He had to stop his night feed early on last night. This morning, I gave him two Bethanechols after he threw up to try to help his stomach feel better so we could get his breathing treatment done, but we could only do one minute of CPT.  He said while he was throwing up this morning, stomach contents started leaking from around his G-tube stoma.

I looked into my past blog posts, and the last time he was on Bactrim, he was having a lot of vomiting issues as well. The last time, the doctors switched him to Levaquin. So, I called the On-call CF doctor to see if we can switch him to Levaquin again, which they will do. Hopefully, this helps, but he is suffering right now. He says he feels cold, but yet he is sweating profusely.