My 3 1/2 year old nephew Danny awoke last Tuesday and told my sister, "Mommy, I can't stand up." They spent the afternoon and evening in the ER at Loyola Hospital. He was admitted at 1:30 the next morning, after a battery of tests and MRI's.
I wrote this diary on Tuesday night, and hundreds of Kossacks responded with warm thoughts, wishes and prayers.
Please join me over the jump.
My sister read this response on Wednesday afternoon, and said to extend
a sincere thank you to everyone who has been so kind in offering their support and prayers
What follows is an update on what's been happening with Danny, since Tuesday
Danny is in the Ronald McDonald Children's Hospital at Loyola Medical Center. (When you get off the elevators at his floor, you are at a train stop - the elevators are a train, and Ronald's sitting on a bench. My older nephew, Eddie took a picture of me with Ronald - I'll try to get a copy, when I can.)
By Wednesday morning, Acute Transverse Myelitis was diagnosed. They'd started him on an IV of steroids to treat this. When my dad, his wife and I arrived Wednesday afternoon, they'd not allowed Danny to eat, because they 'might want to take a spinal tap.' (He'd not eaten since Monday, dinner, and not had water since getting to the hospital, Tuesday afternoon.)
The kid was GRUMPY in a major way.
They gave him the spinal tap, let him come out of the sedative (and I was told in response to my specific question about the tap that he would not feel it - and that seemed to be the case - he was definitely GRUMPY, but not in pain, it appeared), and let him eat what he wanted.
I'd bought colored Goldfish in the gift shop. This was his appetizer. His main course was Macaroni and Cheese. ("Tasteeeeeeeeeee.") And his desserts were fruit snacks and oreos. Oreos fly like frisbees and then get nibbled on the edges.
He was way happier during and after eating. At 2:30 the next morning, Danny's IV clotted, and they made 9 attempts over 2 hours to put it back into his arm. I believe my sister finally said, "ENOUGH." And at 6 am, someone came in and put the IV into his ankle or foot.
I went to a class on Thursday and did not see him. Yesterday/Friday, we went back in the afternoon. When we arrived, both he and mommy were asleep, so we waited in the family room for them to wake up. (I fell asleep there, too.)
We learned he'd had an operation (procedure?) to install a "pick" in his upper chest, so that he shouldn't have more problems with his IV.
When I got to his room, the nurse was doing little tests and checking things and thoroughly pissing Danny off. His answer to any question was, "NO!" Do you feel this? (touch leg) "NO!" Do you feel this? (touch nose) "NO!" This, and prodding and testing went on and on, and on. He was told, "just this one more thing" a zillion times, and then there'd be something else. And he was promised he could go by the train in the play room.
When they FINALLY finished, three doctors filed in, Old Doctor, Middle Aged Doctor, And Doctor Doogie Howser (who has mostly dealt with us, and who will answer any question I ask thoroughly and ask if I have a follow up. He has a name on his coat, but it's long, and his coat is open, so I can never read the name.)
They told my sister that they had observed Danny and there was not a change, so they wanted to start an IV of "gamma Globulin." It would be given to him through his IV over 8 hours. He would be checked carefully - especially blood pressure which can drop(? - think that's what they said), so if that happened, they'd slow the flow and that should make things ok. They'd check the BP every 15 mins to start, then if ok, every 30 mins, then if ok, every hour, til done.
My sister started crying, and asked if the lack of response meant that he was one of the ones who might not do as well - a little more roundaboutly than that. Middle aged doctor said, "no, no real indication of how he'll do ultimately - we just want to attack this disease early in its lifecycle, and he'll do better in the long run for having done that, and this is the next step."
We got Danny into a wheel chair and walked him around the different areas, and learned that the promised train had been locked up since 1 pm - and until MONDAY.
I cannot impart how PISSED OFF we ALL were about that. Danny was not the only one who wanted to cry. They brought him some really awful food that no adult would eat (my sister was promised a menu since Day One, but never given one - after getting that meal last night, she asked the nurse for one and filled it out on the spot).
Fortunately, Daddy had brought in some microwaveable bacon (Danny is a carnivore - he likes Pepperoni and goldfish and bacon.) He had 4 pieces of bacon which (yay) made him thirsty enough that he drank ALL his juice with medicine in it!
When we left, he was still very unhappy. I'd brought in a couple of cars and the bag of goldfish and stuff on Wednesday, and he was having fun with them. I did the same yesterday, and he looked at each thing and said, "I HAVE this car...." (He didn't.)
I called this morning - not going to visit today (she asked him if I should, and he said, "no," which is better than, "NO!" He took the IV well, and YAY! The nurse is going to open the play room with the train, so he can play!!!
I have gotten some wonderfully supportive and question-answering emails from StrangeAnimals, and thank him completely. I have been looking at more sites - the one from Boston Hospital made me think that Danny was going to be up and about in days and unlikely to have any long term effects. I now have read or heard that there's only a 33% or a 50% (different sources) chance of full recovery. A 33% or a 25% (different sources) chance of recovery with some remaining side effects. And a 33% or a 25% (different sources) chance that he will not recover, with the possibility of being bedridden.
And here's where I go with that. Most of you who read this, who have read my diaries, know that I'm on a weight loss program, and have lost a huge amount of weight, have a sizeable amount left to go, and have started running to get fit and feel better.
And I'm doing that for me. I mean, there's no guy in my life who I want to impress or catch or look better for (and honestly, given how I look after I run, that's kind of a given...)
But I have been thinking, since the minute I saw Danny, right after he was born, "that's a mini-male version of me..." His brother Eddie has been long and skinny and ultra active since he was born. Danny is compact. He is long torso, short legs. He is stocky, chunky, solid. He ate huge amounts of food (comparatively) as a baby. He started eating solid foods early. He eats bacon and pepperoni and goldfish. He has a weird sense of humor. I love Eddie completely, but I see myself in Danny.
Soon after he was born, I started to worry that he would grow up and be like me - overweight and unhealthy and unfit and miserable. And I realized that if I were no longer overweight and unhealthy and unfit, I'd be less likely to be miserable - and he'd see a better example to follow (though of course, he's got the best example in the world with Eddie.)
So I've lost about 175 pounds in 9 1/2 months, and (under optimal weather conditions, mostly to do with heat and humidity) can run for several miles. I was hoping that next year our whole family could do a 5K run/walk.
Well, I guess I'm still hoping that. I'm just crying while I hope that.
When I called this morning, Danny was playing with his toys. He wanted to get his mom's attention, and didn't so he said, "Sandy." She told him he made Aunt Sheddhead giggle, so he got on the phone and said, "Sandy," and "arf, arf, arf" (he's playing with dogs) and "poopy," (apparently "booger" was busy,) and "we're going for ice cream" (and that it will be "purple" ice cream.)
Thank you for your healing thoughts and good wishes, and please continue to think of him.