Lots of Twists and Turns

So much has happened since my last posting that I am shocked when I see that's it's been an entire month since I've touched base. Today is June 21st - the summer solstice, the first day of summer. Time for BBQ's and swimming pools, sailboats, vacations and beaches. I hope everyone reading this is able to enjoy all the great things summer has to offer!
Let's see.....we made it through the Mother's Day episode, the shunt, etc. and kept on track for a period of time, coming off steroids, continuing to receive treatments, etc. but not really feeling like JR was back to feeling like himself just yet. He was still weak and not always able to pay attention. I would sometimes find myself getting frustrated with him, thinking that he was just used to getting his own way and resisting me, so sometimes I'd do some teeth gritting to get him to take medicine, pay attention or whatever it was I was trying to get him to do. It would usually work, so it reinforced to me that it was his choice to drift off to never never land. After all, he is a nine year old boy and nine year old boys don't always say "how high" when I yell "Jump!" Imagine how guilty I felt to learn that he wasn't necessarily able to control himself but was having some physical difficulties. It's heartbreaking.
We went for his regular treatment on June 3rd, my birthday (33rd), nothing of note to report there. We were just finishing up his steroids at the end of that week and hoping that we would see a change back to himself. He was eating huge quantities on the steroids and that was starting to slow down and I decided that I thought it was a good point in time to just let him be on nothing for a while. It made him pretty tired and not too enthusiastic about things. I was really trying to get him to go back to school to finish up the year on a positive note and feel like a part of his class. His class, in the meantime, had sent home the cutest poster with huge letters made out of pictures of the kids spelling out "We Miss You", adorable. It was great to have him home but he just didn't feel well and I felt so bad for him. We tried to rally to go to the Sugarbowl, etc. (local luncheonette) but just didn't want to do anything and often felt shaky when he walked. I just figured he was healing but instead of feeling better he just kept feeling more tired and more sluggish.
So at 4 a.m. on Wednesday morning, June 11th, Jim woke me up to say that J.R. was not responsive. He was having a seizure and we called 9-1-1 and went off to Stamford Hospital in an ambulance. We were then transported to NY Presbyterian via ambulance. That was a pretty eerie ride since we had done the same thing last August on our first day of this chapter of life. We were admitted to the pediatric ICU, treated with some anti-seizure medication, given an EEG (like and EKG but for the head) and sent over to Sloan Kettering (referred to as "Memorial" by the staffers) for a brief day of monitoring. That Friday night (Friday the 13th) we went home, a little nervous but always happy to come home.
Now we're at Father's Day weekend. Saturday was a pretty good day, it seemed as though JR was getting better, had a couple of meals, seemed pretty alert, etc. Sunday morning, however, he just wasn't with it. He managed to walk from one room to another with some help (he hadn't walked for a few days) but he was a lot more "lights on nobody home". We were worried. We called the doctor on call at Memorial and he told us to bring him to the local emergency room. I just wasn't doing that. He was stable and the thought of waiting for an ambulance to take us back down there, etc. was too much to consider. He asked us if we had some Ativan at home. Luckily, we did and gave him a dose and brought him straight to Urgent Care (the "ER"). At least all 4 of us were together for Father's Day. We made the best of it. He was admitted and CT-scanned and tested, etc. and ultimately sent "across the street" meaning transferred back over to the Pediatric ICU (the "PICU") at NY Presb. Cornell. This involves taking an ambulance to go exactly one city block. JR had video monitoring to try to catch these seizures as they were happening but had none during the monitoring. This lead the doctors to believe that it was just progression of the disease and that we should prepare ourselves for the worst case scenario. At this stage, JR is pretty much just sleepy and we were incredibly distraught.
JR's "team" at Memorial just wanted to get him back "across the street", so we again boarded the ambulance (Addie came with us this time, school finished on 6/19) and this past Thursday (6/20), we came back over to Memorial (where we remain today). Both Thursday and Friday were filled with many visitors all hoping to help JR feel better and encourage us all to hang in there. We had all of our respective immediate and extended families come and it has been amazing to feel the love.
Even today, we are still not sure about exactly what is happening as we have had a few seizures and some more monitoring and nothing captured on the monitors, frustrating us and the entire staff here at the "Pediatric Observation Unit" here at Sloan, commonly referred to as the "POU", pronounced "poo". This is a quasi ICU but not a fully equipped ICU, so anytime a true ICU is needed, across the street you go. We thought we'd be home by now and will be as soon as he is more stable.
Where to go from here, you ask. Good question. We are going with our gut feeling which is to keep trying to conquer this disease which is causing all this trouble. I think that if we can keep JR stable enough, then we can keep giving him his treatments and hopefully be victorious. That's my gut and I have to go with it.
As always, thanks for taking the time to check in on us and I hope to be updating you with some great news soon. Until then, tell everyone you know to keep the prayers coming. We should be home soon and will be so grateful! Enough of this hospital!