Monday, September 15, 2014

Jude's saga continues

Jude had a horrible night last night. I was up most of the night holding a suction to his mouth because he was coughing so hard he was vomiting. Then he started running a fever. So then I started running down the list of what this could be
Baclofen withdrawal?
Aspiration pneumonia from the vomit during the attacks?
Viral infection?
A pump infection?
I knew Jude needed to go in to get check out since something minor can quickly escalate. My plan was to go into work and get everything I could caught up. Then I would head home and take him the the pediatric ER at the hospital we had the pump placed at.

My plan worked until Charlotte and I put Jude in the van to head to the hospital and Jude started violently throwing up. I expressed my concern driving with him in that condition. I ended up stopping at Roanoke fire dept and they helped me transport Jude. They were SO nice. They gave Jude oxygen, fluids, and Zofran in the ambulance. Once at the ER they ran dozens of tests and looked at his history over the last few months. The doctors were stumped and felt so bad for Jude. He would not stop vomiting and had an episode so violent in X Ray that even the men we calling Jude, "poor baby".

His chest X ray looked good however they pointed out aspiration pneumonia can show up on an X ray 72 hours after a fever. We know that because it's happened before. The abdominal X ray was negative, his urine was negative, and his stomach was soft. His blood work did show elevated white blood cells. That could be anything. There were two doctors in the ER and we were dealing with both of them. The first one wanted to admit Jude because of the vomiting and because she felt more tests needed to be run. She also ordered some more IV fluids. Soon the other doctor came in and explained some more test results. I explained that I would like to make sure Jude got his IV's but then I was considering taking him home. I explained that Jude hasn't been the same since the Baclofen surgery and even if this isn't related it just seems to be another complication. I pointed out that there entire waiting room is FULL of respiratory patients and I didn't want Jude catching something else on top of all his issues. I told him we know how to monitor Jude and just like earlier today when we transported we know how to make the right decisions. I then said "Jude isn't the same. I'm not sure if this is the start to aspiration pneumonia, if it's a stomach virus, if it's baclofen withdrawal, spinal meningitis, or if this surgery was to much. Sometimes I wonder if all this is just because the surgery was to traumatic for him and I wonder if he will ever be the same again." I told him I wanted to take Jude home and if he continued to get worse to take him to Dallas Medical City where they helped find the solution to the complication after his surgery.  He replied that it IS possible the surgery was just to much for Jude. Then he said I seemed very medically educated and everything I said made sense. He said Jude is just a sick little boy.  I requested some Zofran and some Erythrimiason. My reasoning was to stop his nausea and that if we are having another issue with his bowels slowing that the antibiotic would stimulate them. The doctor agreed and gave us a prescription for each.

The drive home was NOT easy! Jude retched the entire way home. However Jude gave me a BIG smile when we got home so I knew he was in the right place. I am trying to feed him Pedialyte but it's not going so well. If Jude doesn't continue to improve then we will head to Dallas, but let's hope he does.

Sometimes I wonder if I should just keep Jude as comfortable as possible here but then I panic and realize he isn't doing well and rush him in. I am just torn.

1 comment:

Reagan Leigh said...

It's SO hard! I'm always second guessing myself too. And the majority of the time my plan of action is what the doctors defer to...but sometimes you wish you just had a doctor that could tell you what is best! So, with cyclic vomiting syndrome (CVS, commonly seen in mito patients), iv fluids are very helpful (just make sure he's not getting lactated ringers) and erithromycin, while they say it's a tricky med for mito patients, I've seen many that are completely dependent on it to keep their GI system moving! Certainly worth a shot! I do think that Jude experienced a decompensation event due to the surgery (which is also typical), but he can definitely recover and get back to his former just may take a lot longer than you'd like! Hang in there! I hate to see him struggling and I know how stressful it must be on your entire family! You guys are definitely in my thoughts and prayers!