I lost an entire post last night - that hasn't happened in a long, long time.
I thought I was going to update about a packed weekend - everything from a sleepover to finishing a group science project terrarium, finding tadpoles, an away game, a girls lunch and Ikea shopping spree, a lanyard workshop, a dad and kids movie date to The Lightning Thief, a family afternoon at the park, throwing the ball to Honey, drilling shots into the goal.... delivering Girl Scout Cookies. But, alas, with Monday came much more excitement. We did notice through out all of these activities that Hans wasn't quite as spunky as usual, wasn't quite eating as much as usual. But, we had hoped he was eating enough.
We had all gotten up early to do our thing, leaving Hans to sleep in until about 8, when we went to wake him. Kevin was already en route to work, and Elle heard him "moan". When I went to get him, he was cold, clammy, not waking up, and there was a little bit of drool coming off of his lips. Another Hypoglycemic event (aka coma) was happening. I told Elle to call 9-1-1, brought Hans downstairs to the couch, and ran to the car to find the emergency bag with his injections. I was shaking like a leaf as I pulled out everything I needed to administer the two life-saving injections, Solu-Cortef and Glucagon. Elle did great on the phone. I heard her reeling off stats...Arenal Isufficient, Neuroblastoma, Hypoglycemic, Unresponsive. She is a pro. I would have had a very hard time doing this without her. I got the two injections into Hans' legs and he had virtually no response. He was breathing and had a heart rate, just unconscious. Elle called Kevin, and he said that as soon as he saw her name on his phone, at 8:20 am, that he knew what was going down.
The ambulance arrived and they packed Hans into the aid car. I am not so cool in a crisis, so I hadn't even taken the time to fumble with the glucometer, I just skipped the reading and went ahead to the treatment. They took it in the aid car - it was 17 - surprisingly low, especially considering I had given the two interventions about 10 minutes prior. Normal range for a 'fasting' blood sugar is about 110. The medic gave Hans another injection of Glucagon (I guess this med releases any sugars stored in the kidneys, the problem was, Hans probably didn't have any sugars stored in his kidneys.) The medic was afraid to access Hans' port with the only needle they had in stock, and she didn't want to try and fail to get an IV. I actually tried to encourage her to access him with the huge adult needle. I shot off a text to a few family members and friends. I prayed the Hail Mary over his cold little clammy bald head. I knew he could pull through this, but I started to wonder, how many times can he pull through this? This was the fourth time we've had this scary event.
By the time we got into the local ER and got an IV going, Hans had probably been in his state about 90 minutes. Fortunately, he started to come around once they gave him three doses of D-25 (Decadron), and a couple more doses of D-10. He finally started to respond. His first move was to open his mouth and lift his tongue for the nurse to get a temp. His temp wouldn't register. He was that cold. His next move was to request Jack in The Box. Oh, my baby!
Kevin made it to the ER. Once Elle could see that her brother had responded and was fairly stable, I got her and her group terrarium project to school. When I got back to the ER, Hans was alternating between eating and sleeping it off. I told him that he wouldn't have class today with Ms. Kathy, his eyes opened wide with a proud brave look and he said, "I could do it!" The funny thing is that when I called Ms. Kathy to cancel, she had the exact same response, "I could come to the ER!" These two are meant to be together! But, I had to be the wet blanket and cancel, thinking of a lesson going down in a tiny ER room with no table, nurses coming in and out, and an exhausted Hans.
It is taking us a day or two to shake this one off. It has me thinking of and counting up all of the close calls that Hans has had: 4 of these Hypoglycemic Comas over the past 2 1/2 years, two serious line infections that landed him in the PICU, and the horrible time he had coming out of his first surgery with the fluid retention and all of the life-threatening complications. All of this has me admiring the strong little soul Hans has. He is a fighter. He gets intense and goes somewhere deep within himself to pull through. The will to live...the life force that we all have, has kept him from going over the edge at some very serious and dangerous moments. Hans has lived an amazing story. I'm honestly not sure to think of him as charmed or cursed. I'm just deeply moved by his stamina and his endurance and this odd little zen-like spiritual quality about him when things get bad.
That's enough for now. I had a great talk with our Endocrinologist yesterday. I'll write more about that soon - I think we've had a breakthrough regarding how to take care of Hans and prevent these Hypoglycemic events.
Everyday is an adventure. Everyday is a gift.
- Hans Weberling
- Bakersfield, CA, United States
- Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.