A long road, maybe HOME.

Oh my dear Drew... my heart aches for you. I don't think I can get through this post without crying but fortunately there is a box of Kleenex handy. I don't even know where to begin, except to say that we covet every prayer possible for our little Drew. He is so close to God's domain now that I don't know if I am helping anymore, I just pray he is comfortable in God's hands right now.
We went to the ER a week and a half ago with Drew seizing strongly and having problems breathing. At first they didn't know if it was pneumonia, an asthma attack, or choking due to his seizing. He had stopped eating a couple days before, and looking back, I wonder if he was having a hard time swallowing things and knew he shouldn't be eating. We were admitted that Wednesday and they watched him for two days. We were sent home Friday at 3:00. We had been home not 1/2 hour when he had another incident and we were back to the ER by 5:00 with Drew having severe breathing difficulties. I am sure it was due to his seizures - when seizing he couldn't swallow his spit and then after the seizure (one of his stronger, intermittent ones) he would start choking, maybe due to weakness of the muscles that could help him swallow. We gave him a new emergency that night that seemed to have worked really well and we were home by 9:30 p.m. We had a new plan for home too now since that new medication worked.
Over the last couple weeks we had to treat Drew for some stronger seizures but the emergency med we were using was also one of his maintenance seizure meds so the levels in his body were getting way too high. One of the side effects of that med is that it could depress his breathing due to sluggishness so we were trying to wean him off of that a bit as that could have contributed to the problems and now we had a new medication we could try to use at home instead of that one. The only thing about the new one was that we could only use that one twice a week tops as well so it wouldn't get too high and again, possibly depress his breathing. So, the plan a week and a half ago was to only use that one if he got unresponsive or started having problems breathing due to seizures. We made it to Monday before we were back to the ER with severe breathing difficulties and an unresponsive Drew. Mid-day Monday he was doing better after the emergency med but we noticed he had problems so did a culture and found he had a urinary tract infection. We thought maybe we had something easy to deal with and could get out quickly!!! No. We were looking ok, but Wednesday he seemed to have some other symptoms and some more breathing issues so we were examined further and were to stay a bit longer. Wednesday night we nearly had a Code Blue - there were people running everywhere trying to get Drew breathing ok and to get his seizures controlled. (We also had a bad seizure session Tuesday night.) He was ok after that on oxygen, but becoming less responsive. Friday he was even less responsive, gurgling in his breathing, and really working to keep his airway open, all while seizing still. Poor guy. And still not complaining. Friday night they sent us to the ICU for airway support.
I think Friday was the hardest day of our lives to this point - we had a meeting with all of Drew's doctors and nurses. They wanted to know where we stood on how we wanted to support Drew if he took a turn for the worse from this point, and to make sure we understood the seriousness of his condition (even though we don't have a name for it yet!!!). So surreal. Our Drew. Here. Now. Too soon. Why? Just trust.
Anyway, we are still here in ICU, not sure which direction he will go next. He is relatively stable right now thankfully so that is good I guess. He is doing a little bit better today than he had been over the last 36 hours. He was unresponsive yesterday but this morning he started crying again. Just a little, but showing emotion nonetheless. I think he may have actually tried to smile but started seizing because of it. Any exertion right now seems to start a seizure. He is breathing with just a little oxygen, lots less than yesterday. He is keeping his airway open better and is rattling in his breathing a little less. He has a low grade fever sometimes, but low grade is alright for now. He has been tested for pneumonia but doesn't seem to have it - they will do a follow-up x-ray on Monday morning. He has some strange things going on still for some reason that they can't understand though - he is still fairly unresponsive, looking through us rather than at us. He can't sleep for longer than an hour or two at a time. He is flush on only one side of his body, (the same side that was sweating before). He is also retaining water on that side of his body. He still can't swallow so they are drying his secretions with medication which is helping with the choking, but also seems to be affecting his ability to pee possibly - he has to have a catheter inserted every 6 hours (sorry for the additional information but getting it out seems to be therapeutic). As he is doing alright breathing, we are probably going to be released up to the general wards tomorrow morning if he continues to be ok.
On a positive note, we have had one of the best nurses Drew's had yet over the last two days - what a lifesaver. We also have had two of the dearest nurses from the unit upstairs come by to visit - incredible ladies. We have been blessed with some of the most wonderful, caring nurses during this experience. These people have made a huge difference and I don't know how they can do the job they do, but man am I glad they do.
We are surviving as a family right now - challenging time, but life seems to carry on. Our families are here with us which is providing so much support. It is very difficult to talk to many others right now, it just hurts too much and seems like time I would rather spend focusing on Drew. Selfish perhaps, but when faced with the idea of losing Drew possibly in the near future, there is nothing I want to do more than to be with him, holding him, helping him, comforting him, just being there to listen to him breath, and to be close to him. Jordan is amazing - I couldn't ask for a better father for our kids, or a better husband. I have never seen him hurt so much though. I am glad to have him alongside through this challenge. We will make it through with God alongside, but I pray He gives Drew peace. It is so trying to watch him seizing all the time and struggling to breath. I have tried to kiss it better to no avail. I miss my little Drew so much, and I don't want him to suffer. Please pray for him, that God will fix him - either by taking him home, or by making him better. I just don't want him to suffer.
Deep breath. We are hoping Drew may still come through this - there is a chance. He started a new diet last week called the ketogenic diet. We are hoping it could help with seizure control. Also, if we could work his meds out alright maybe he would be able to support his airway better. Maybe this is all just related to a urinary tract infection and the seizures (and too many meds on board to try to control the seizures). The diet is one of the last ideas they have for seizure control for Drew so we really would love to see it work. There is a chance however that something underlying is causing all these complications, with the breathing, weakness, loss of muscle tone, etc. I think the docs wish they knew as much as we do! Drew has made a huge impact on all those around him - his little personality is so amazing. He must just be part angel! Anyway, he is very fragile right now and we are trying to enjoy every minute with him. We love our little Drew more than we knew was possible. We love all of you too, and thank you for your prayers. Please continue to support us in this way!!!

I will try to keep you all posted, but as mentioned, I have a terrible time trying to pull myself away for long! The family finally kicked Jordan and I out of the room last night for some sleep (the first longer bit in at least 3 days... why would we need sleep?) but that felt like much too long of a time apart from Drew! As such, I will sign off now so I can go get another Drew fix, but we love you all.