Okay quick run down! After my last post Jude had a horrific night so going home was a NO GO on Friday! He was up to 8 liters of oxygen and was having a terrible time. He literally coughed all night long and it was a cycle. He would cough, I would have to make him gag, I would suction the secretions, and his oxygen would lift. A few minutes later it was the same situation. Eventually mom gave out so they masked Jude again to keep his oxygen up. I mean Nurses do have other patients they can't stay beside one bed with suction in hand.
So the next day I asked to increase Jude's breathing treatments to 4 times a day with CPT. Honestly I think hospitals are amazing and do wonderful things, but sometimes I feel I am the one giving the orders and diagnosing. I caught that one of Jude's seizure medications wasn't being given, that they had given to much Miralax (omg I won't even go into it), requested more breathing treatments, asked for the CPT, and ripped the cannula out when it sent him into an autonomic attack. I truly think nurses are underpaid and understaffed. Poor things.
So during the day Jude actually experience a horrible full on Autonomic Dysreflexia attack. The nurses were stunned and were asking "what IS this??". I explained that Jude used to have 5-7 of these a day when the Baclofen was flowing into his Central Nervous System. That now we are down to 1 or 2. They had never seen one and relayed the information to the doctor. There isn't much that can be done from the witness of the attack but it was reassuring that someone else besides our immediate core people saw it. I hated Jude went through it but now we have it on record.
Skip to last night. After his increased breathing treatments and suctioning Jude went to sleep. I was laying there watching TV and I heard him stirring. I tried to be very quiet because I knew if Jude woke up he would cough and if he coughed after waking up he would vomit. However suddenly I heard ma............ma. I thought I had fallen asleep and was dreaming so I waited and I heard a little softer.........mom..............ma. OMG! I said "I'm here Jude. I am right over here baby!" Then he went back to sleep. The only thing I can figure is that Jude woke up and was scared in unfamiliar surroundings and somehow he found a way to call out to me. I don't know the explanation but I can die happy he said my name twice in a row!
So today Jude started the morning at 4am! Hi ho a dairyo the farmer is so tired! You heard me sing that didn't you? We spent from 4 am - 6:30 am trying to get Jude to breathe correctly. We suctioned, we gagged, he vomited.....it was lovely. So when that ended I curled back into my ball and suddenly I heard "ahem" and woke up very startled to a doctor standing over my bed. It had been an hour and the neurologist wanted to talk to me about Jude. I wiped my blurry eyes as he handed me a prescription and I tried to interpret his words. I got the gist that the Clonidine patch is a no go, the Oral Clonidine is a go, and to follow up when the Virus is gone to further explore the Baclofen pump mystery.
I laid there a bit longer and then Jude started coughing. So I got up, got ready, and armed myself with the suction. Overall I thought Jude looked better! Was he well really...........NO!!! However he looked better! So when the floor pediatrician came in he noticed I had taken Jude's oxygen off and put him on room air. Jude was holding at 93 oxygen levels. The doctor didn't seem to impressed, but I pointed out that Jude has his own issues and this virus is just causing additional issues. That a 93 o2 state isn't that bad. I told him I was concerned about Jude's urine output but that the only thing we cannot do at home is IV'S! Just then Jude decided to have a massive storming episode. He coughed and coughed, I suctioned, his oxygen went to 80 and wouldn't come back up, and then.......he vomited. Well crap! So the doctor said he would be back later to consider releasing him. He said, "If this was a normally healthy child there is no way I would release him. I understand you basically have a mini hospital at your house but you have to know that if in anyway he shows that he is worsening you have to bring him back immediatley. I mean 911 immediate". I assured him I understood. Then Mike walked in.
At that point I left to get Emily ready for homecoming next week. We went to ONE MILLION places (lol). Then we went to the facility that is hosting her Emily's Smile Box charity event tomorrow to get everything set up. Then we came home and greeted Mike and Jude. Yes, they let Jude go. We might be second guessing ourselves tonight because Jude has had a tough night, but I know he is more comfortable here. Mike is in Jude's room now suctioning him as he coughs, gags, and vomits. It seems to be a never ending cycle. I feel so horrible for Jude.
Tomorrow we have everyone strap on their running and walking shoes. They will wear shirts that display they are walking for Pediatric Stroke Awareness and on the back of the shirts it says, "I did it for Jude!!". AMEN!