Roland don’t ever scare me like that again, you hear me!

It went like this.

Super happy crazy boy one minute…

IMG_2176

(Click here for video.)

And seizures and vomiting the next minute.

IMG_2180

We had a super fun time with pizza and friends. Everything went great. I put two hyper, pizza-covered kids into bed around 9:30pm. The next morning around 8:00 Roland woke up covered in vomit.

After that he stayed in my arms for the next three and a half hours. I admit I enjoyed it. Baby in one arm and Facebook in the other. We took naps together and he snuggled under my chin. Then he would make a noise, I would get out the bucket and he would puke and then go right back to sleep in my arms. I just purred over him. He is usually so crazy rambunctious so this was nice. We even took a picture to remember this.

IMG_0423

IMG_0425

 

But the poor guy kept throwing up which worried me. He threw up small amounts eleven times in those three or so hours. I had a cup of apple juice ready for him but he wouldn’t stop puking or sleeping long enough to get any fluids. Then right before noon he started his first seizure. I ran him out to the living room to show my husband. It was the tail end, but Charley took a video. When he started another one we ran out the door. I jumped in the driver’s seat while Charley loaded him into his car seat. He didn’t look good. The emergency room is only about four or five minutes using back roads so I took off instead of calling 911. Roland had five (maybe more) seizures after that. He was seizing in my arms as I ran him into the ER, and he continued seizing as the RN took him from me. The RN’s name was Steve and he was a big guy. My little guy looked *so* little in Steve’s arms as they quickly made their way through the double doors. Whereas I was a panicky mess, Steve calmly described the seizure as it was happening and that made me feel like maybe this wasn’t so bad. Maybe everything was fine and they see this every day and it turns out okay. So I calmed down a lot.

Then I answered about 800 questions about arthrogryposis and adoption, none of which were helpful for a seizure, but the doctors needed his history. One doctor asked if I was his mother and then demanded to know why I left him in an orphanage for almost two years. I explained I adopted him and he’s been home four months. She replied incredulous, “Wait, but you said you were his mother!”

The truth is shocking. He has no medical history. I don’t know what he weighed at birth or if he came early. I don’t know how healthy his mom was or what surprises are in his genes. I don’t really know what they gave him at the orphanage. I don’t know what drugs he’s been exposed to. I know he has a lead count of 2 (at 3 they do medical intervention) and he has had to catch up on vaccinations, but other than that I’m no help at all. I kept being asked, “Has he ever done this before?” And kept having to answer, “Not in the last four months!”

And in the back of my mind was the knowledge that he had been misdiagnosed with convulsive disorder in Ukraine. That diagnosis turned out to be false. (The “doctor” had mistook a jerking arm for a convulsion because she didn’t realize AMC came with muscle loss and he would need to swing his body or bounce his arm to move it. After meeting Laelia and seeing how she moved the doctor said Yegorka [Rolly] did not have convulsion disorder after all.) But what if it was true? It was scary to think about.

I was worried Roland would be scared of the hospital or strangers, but at this point Roland was completely unresponsive–no eye contact, couldn’t close his mouth, non verbal, limp, eyes rolled back. The nurse was checking out his head and shoulder for veins, but finally it was decided that he needed an emergency cast removal in order to place the IV. I was glad Laura (from Dr. W’s clinic) was there to do it since we know her and she is super fast. Roland had a startled response during the sawing part, but he was not “there.” His eyes were crossed and downward, the right side of his mouth did not move while the other side twisted in pain and he looked like he was in a coma. I kept crying, “That’s not normal. He never does that.”

Roland was given ativan and glucose. He was hypoglycemic with a blood sugar count of 19! Normal for his age is 70s to 80s! Eventually Roland made a noise. I asked him to say hello but he couldn’t. (I ask him to say hello about a hundred times a day and he happily complies about a hundred times a day.) He was rolling his eyes looking around the room, but unfocused. It was creepy. Eventually he looked right at me and seemed to recognize me (he had not up until this point) and he lifted his arms for me. The nurse said, “That’s the glucose working!” I asked him again to say hello and he tried so hard to speak but couldn’t. A tiny squeak came out, but you could tell he was trying. It took him a while to come out of the seizure. Eventually Roland looked at me, right at me, and said “da.” Then he looked down at his arm which now had no cast and an IV and wires and he just looked baffled.

IMG_2184

Roland’s right arm without a cast and with an IV.

Every finger had to be poked more than once so eventually he was just covered in bandaids.

Charley and Laelia then came through the doors at this point. We were transferred from the ER to the critical care unit as a family. Because they had to move fast and Laelia cannot walk that quickly Steve put her on the bed. She comforted her brother and enjoyed the ride. Roland was still completely out of it and barely noticed his sister.

IMG_2181

We left the ER and arrived at the critical care unit. Roland was connected to more monitors and the doctors came up with a game plan. They wanted to get Roland’s numbers up, keep them up long enough to make sure he was out of danger, and then purposely lower them again in order to run tests. So he went from 19, up to 120, then artificially crashed back to 40 to run the tests. Poor guy was so scared every time someone took his blood pressure or poked his finger or anything. Then when they introduced glucose again after the blood draws his numbers shot up to 250! His poor body just couldn’t regulate.

The hospital had Christmas presents for patients left over so they gave him a dog pillow. Roland hugged and kissed it (he’s really attached to stuffed animals) and then fell asleep with his wittle face pressed against the bars. That was his favorite way to sleep.

528501_10200365011193792_134289654_n

 

After the tests were run we had to wait overnight to get answers. In the afternoon Roland was sick of the hospital and tried to take a nose dive off the crib and pull his wires out. I ran home with Laelia and we grabbed Roland’s pillow, blankie and teddy bear for comfort. (Also a toothbrush for Daddy.) Roland settled at that point and fell asleep… only to be woken up several times with blood pressure tests and blood draws and finger pokes and monitors beeping.

564090_10200193103456142_993360300_n

 

Okay here’s what we know. We know the seizures were absolutely caused by low blood sugar. Not an injury (that boy is always bumping his head), not a brain condition (so no MRI needed) or anything like that. Here’s what we don’t know: why vomiting caused his blood sugar counts to crash that much. It shouldn’t have. Also we don’t know if the low blood sugar caused the vomiting or if the vomiting cased the low blood sugar.

Here’s the doctor’s guess after two days in the critical care unit: Roland had very small reserves for glucose from his life in the orphanage, exposure to lead, lack of medical care and poor nutrition. The doctors say that all his medical issues from being deprived early in life will be completely reversed with time and not to worry, but we will keep an eye on his blood sugar from now on. We have been educated about hypoglycemia and what to do in an emergency. (Of course our insurance denied us for the emergency medicine that would have saved our son five seizures if we had had it. Thanks insurance!) We got a chemistry quiz and biology lecture from the endocrinologist who should really be teaching in a classroom somewhere he’s that good. When we got home we had training on this new condition, a glucose monitor that even blood-phobic me can use and an emergency plan in place. After one night’s sleep at home Roland was happy and bouncy again.

 

IMG_2199

 

Just kidding guys! I’m fine now!

:-/

 When we got home we were informed that we had end of the year adoption reports to do. They ask what Roland’s diet, daily routine and health is like at home with us. It took everything in me not to write, “Like hell you care! F you!” and send it back just like that. But if Russ*a can punish thousands of dying orphans for the mistakes of 19 American families (out of 60,000 over 20 years) then I had better do what’s asked of me and what I’ve promised to do and continue to play nice. Still I’ve been pretty mad at Roland’s birth country, orphanage and birth family as well as those in my church and community who do. not. care.

*deep breath*

But now we’re doing well and everything is slowly getting back to normal. Roland says hello.

 

 

 

 

3 Responses to “Roland don’t ever scare me like that again, you hear me!”

  1. Molly says:

    “Still I’ve been pretty mad at Roland’s birth country, orphanage and birth family as well as those in my church and community who do. not. care.”

    This. This times a thousand. I get so mad sometimes! On the other hand, there are tons of people who DO care, so I try to focus on them so that my head doesn’t explode. Glad Rolly is on the mend and hoping that you have a very medically boring 2013!!!

  2. Maureen says:

    Aww, Alexis. I am so thankful that Roland is doing better and that you have knowledge that was not there before. I can only imagine the adrenaline that was coursing through you and Charley as this unfolded. I agree with Molly: try to focus on all those whom God has given to you who do care and be thankful for them.

    Love, hugs and prayers,

    Maureen

  3. Danielle Cervantes Stephens says:

    So glad that Rolly’s doing better! Hugs!

Leave a Reply