Mike told me today how he was reading everyone's updates on Facebook about their long holiday weekend. He mentioned how relaxed they must feel and how they got a refresher so they can go back to work. He was feeling a little down and jealous. I get it! I have to go back to work tomorrow and I am EXHAUSTED! It's just the way it is!
I tell you what ..... nothing like your kids stats dropping to the point that the charge nurse slaps crash pads on him to make you be grateful for what you have. God has a way of reminding you not to envy. So the back story......last night they did an EEG on Jude because his seizure activity had picked up. They said he was having six seizures an hour and they needed to give him medication. They told Mike they were giving him Keppra and possibly ativan. Little did we know they were also giving him Fosphenytoin. I got to the hospital today about 9:30am and I saw Jude was still sleeping. I mentioned a few times he was "still" sleeping as the day wore on, but Mike said the sleep was good for him. Finally I walked up and pried Jude's eye open and there was no response. So I called the nurse and pointed out his stats were wacky and Jude seemed unresponsive. She agreed and called the dr who showed up within minutes. She explained that the medication the other doctor (neurologist) gave him can put him in a deep sedated sleep. Um not okay with that! If I had been aware I would not have allowed it ESPECIALLY after reading the side affects. I also didn't think it was a great idea with his respiratory history. So the day wore on and Jude finally woke up.......his breathing got erratic, his eyes got very big, and he went into a full blown seizure. Jude normally never destats when he has a seizure. I truly believe it was a reaction to the sedation. Jude's stats fell dramatically and kept falling. His pulse ox was down to 70. When this happens things come out of the walls like transformers, alarms go off, and everyone gets REALLY loud! Me? I just cried and said Jude Jude Jude!!!! The thought crosses your mind........is this it? They got him stabilized and I realized I may have been a bit dramatic, but it was still scary as hell! Jude looked AWFUL. I would post a picture, but just trust me.
They left Jude on oxygen after that to regulate him out and we all watched him carefully. Later that day my friend Shelley came in midst a G Button change and a few stat issues. I could see her tears and explained Jude's complications are sometimes hard to see but that he was okay. She knows this all to well and I know it was hard to see. Each hour that passed the sedation medication wore away and Jude began to look more like himself. This was the first time since Tuesday that I actually saw JUDE! I still noticed a few things....his IV looks a little infiltrated again and the pump area looks rather red, but Mike pointed out when we mention things they sometimes snowball into a glacier. So we asked out nurse to simply watch those areas.
The GI still believes Jude has pancreatitis and we are treating it as such. We slowly started introducing Pedialyte tonight. I had to leave and come home so I could work tomorrow......such a hard hard thing to do. Mike texted and said Jude had a bath AND a bowel movement. This is such GREAT news. I also got an amazing smile before I left and I finally felt ........normal. I have to admit I was professional but forceful on this visit. I just felt like things weren't done correctly, but I know Jude is a complicated case. I am praying beyond anything that Jude has turned the corner and has fought this battle with the courage he always does and won. I pray I can go to work tomorrow without the stress of Jude having issues and then take him home on Tuesday. I love that little boy!