Hospital stay no 9??? Maybe the 10th one is free :)??

Jagger is back in the ICU since Tuesday... Of course because daddy is supposed to go out of town. We somehow always end up in the hospital when daddy has a major tip planned or its somebody's birthday:). I think this is hospital stay number 9?? I stopped counting. As I was walking out the door on Tuesday morning Jagger suddenly developed a fever. He had been extremely whining and agitated for a few days already. He also started to breathe funny so we hooked him up to the monitor to see. To our surprise his SpO2 level was actually above 90 but his heart was hovering around 175. ouch. So after a dose of Tylenol and an hour of monitoring he didn't improve so we took him to the hospital. We also thought he may have a UTI because he only peed about once a day at that point. Turns out he had early onset of pneumonia and an ear infection. Any normal kid would have been able to fight this but not someone like Jagger. His body had been struggling for a few days, and I guess the lack peeing was an early sign. So they gave a dose of motrin and antibiotics which helped. But of course he was breathing a little funny (as he does at home) so they decided to put him on high flow oxygen which pretty much means ICU admission. Well we also told them that its either the ICU or we are going home. Dr. Ka from the ICU came and met us in the ER and transferred us to his services  (I had asked him if they have room for us and he said for Jagger we always have room. That was nice!). Our neurologist was paged out of his lecture at the med school next door and palliative care team also heard we were at ER so they all came to see what was going on. Of course in the ER we argued with the doc about his medicine and when to give them. They refused to give him his valium because they were worried about his breathing and didn't want to suppress it however what I kept trying to tell the doc is that if you don't give valium he will go into major spasms and will also stop breathing because of the pain. Jagger seemed ok at that point so I didnt argue further but of course as soon as we transferred he went crazy and it took an hour or so before they had us checked in at the ICU before he got his meds. I always carry his meds with us so was going to give it regardless of what they say. Arghh Jagger was sleeping for much of Tuesday but was pretty agitated during the night. He finally fell asleep at 6 am and at 7:30am EEG people came to hook up the electrodes to his head. We were thinking that Jagger is suffering from silent seizures so wanted to check if anything else was going on. Also apparently most kids with Leigh's disease suffer form seizures so we were always wondering why Jagger doesn't have any. But its possible that with all the drugs he is on we are suppressing the majority of them. Well big mistake to do EEG. Everything went down hill from then on. He got so agitated during the time they took to hook him up, he then started a major pain crisis from about 9-11 during which he was arching, stretching and screaming. To make matters worse, his tape came loose around his huber needle, breaking the sterile field. WE tried to fix it but the needle actually came out. We tried to g-tube morphine. Nothing, tried IV morphine which went everywhere (at that point needle was still half way in but it didn't work). Then tried to flush with heparin to prevent clogging, that failed too. So we took needle off, called cancer unit to come re-access him. OMG, the nurse, who was very good, tried for an hour. Had to clean and prep the area again, the he re-accessed. Didn't work. No blood return. Arghh. Jaggy is hysterical, Seb and I trying to keep him calm to no avail. Nurse went to check xray of port to see if he needs to angle the needle differently. He was in, I know he was but didn't work. Cleaned area again, this time I told him to use saline to check syringe and flush with saline to move things around in the port. Thankfully he listened because even the second try, there was no blood return. He had to push saline and pull back about 30 times or so delicately moved needle around a bit. It was a disaster but he was very good. It is very possible the port clogged since we couldn't get any heparin in him for some time. Nurse didn't even break a sweat. He remained very calm despite Jaggy going hysterical. Finally it worked and we gave him IV morphine and we settled. At this point Sebastien was ready to cancel his DC trip. But Jagger was better in the afternoon and overnight and our doctors encouraged him to go so he left on Thursday morning at 6am. It's a good thing that he went. He met with senators and congressmen to advocate for funding and raise awareness for mito disease and to attend the united mitochondria disease foundation symposium. He also was able to meet with another doctor from Ohio who is trying to get Jagger into the EPI 743 study and he found out major scoop which I will not talk about yet. But it is sickening and infuriating. It is Friday night now, I am exhausted but Jagger is doing better. We were planning on going home today but his oxygen level dropped last night several times and they put him back on oxygen for a bit. So I decided to stay one more night to monitor this and it seems he is only doing this at night because he was totally fine all day sleeping. The plan is to go home tomorrow if nothing else happens. Fingers crossed!