ER visit to Children’s Hospital.

Everyone is OK, we are all ok. It’s been an eventful few days. On Tuesday, Jeremy left for Sacramento very early in the morning – like 5 am. This was a last minute business trip only Tuesday – Thursday. Normally we both don’t like scheduling a cross country trip for only 1.5 days of meetings, but there is so much going on (I think mostly at Jeremy’s work), that he couldn’t spare more time.

At the same time, late Monday night, Edda had a couple of seizures which is not super out of the ordinary for her. She bit her tongue pretty badly, but she seemed otherwise OK – so I sent her to school and aftercare on Tuesday, texting the folks there she might not be eating very well. I managed to get her seizure meds in her Tuesday morning and sent her to school.

So, predictably, she did not eat on Tuesday and on the way home from aftercare, she had a seizure in Ginny’s car and then after Ginny left, she had two more and by this time, I was struggling to get anything into her (like water), let alone her meds.

She had one seizure Tuesday during the night. On Wed, I kept her home – kind of hoping the seizures would abate (they usually do), but by now she’s missed two doses of her seizure meds. But she seemed otherwise, again, OK.

I took the day as a sick day and took her on my errands – first, to the vet.

Inexplicably the vet is one of Elka’s favorite places. She loves the vet (yes, they spayed her. yes, they give her shots). I think it’s because she gets that spray cheese from the can there? I’m not sure, but she’s the only pet I’ve ever had who LOVES the vet. They offered to consolidate our visits because some of the vaccines are out of sync, but I told them it wasn’t necessary because they are just down the street and Elka loves to see them as often as possible. So we were there for her flu shot, which we have not yet gotten as humans.

And since it was a beautiful day and we were all loaded into the car, I took everyone to the dog park. And while I was there, Edda had another seizure. By this time, I’m texting Jeremy trying to figure out what to do. Her tongue is getting bitten each time she seizes, and therefore getting more and more swollen, and the likelihood of me getting her to eat or drink anything is getting lower and lower. It’s this time, I propose to Jeremy to take her to the ER to get an NG tube (down the nose into her stomach) so I can get meds and food into her. We all hesitated because sometimes (I hear from other Rett parents) that the hospital would go all into figuring out about the seizures and not doing the NG tube because they aren’t familiar with Rett syndrome. It’s weird, but I didn’t care about the seizures (I mean finding out what they are or what they are like) because I know it’s from the Rett and really will never go away, I just cared about being able to feed her and getting the meds in her. We decided to try to touch base with her neurologist at CHOP and go home and go from there.

So after I got home, I had lunch myself – for Edda, I bought all the soft food I could – rice pudding, chocolate pudding, ice cream, bananas, applesauce, etc. But she was having none of it. We were in email correspondence with CHOP, but the turnaround on the advice was slow. About 2 pm, she had, yet another seizure, and by then, her tongue was bleeding pretty profusely and I told Jeremy, I need to go to the ER because now I just needed the seizures to stop.

So I packed our bags in case we were going to be admitted and headed down to Children’s Hospital in downtown DC. I am grateful Edda still qualifies for treatment at a children’s hospital – the age limit is usually 21. If this was next year, I wouldn’t be able to swing being treated at Children’s. It took me about 90 minutes to get there, a lot of traffic – uneventful, no seizures from Edda. And then I walked Edda in her wheelchair into a packed ER waiting room and looked at the displays which had each waiting person listed by number (I would estimate about 25 people waiting to be seen), how long they had been waiting (someone had been waiting at least 3.5 hours) and the order in which they were planning on calling them back. I sighed and thought, this is going to be a long, long wait. I wait 5 minutes to register and got up to the desk and handed over Edda’s ID and got her registered and then the person said, give me a minute and I’ll come around and give her an ID band and as he turned around, Edda started in on another seizure, blood spurting from her mouth, and I slammed my hand against the little glass barrier between me and the registrar and said – she’s having a seizure RIGHT NOW. And, just like that, we skipped the line of 25 people, got rushed back into room 31, where a team of 6 people worked to stabilize her, give her a big shot of versed and let her recover from her approx 10th seizure in 36 hours.

As they got her settled, they looked at me and I asked if I they could put in an NG tube and send her home with me. And the attending (Sam) was like – yes! I like that plan. Let’s stabilize her and send her home. At that time, Dr. Marsh from CHOP called and I handed my phone to Sam and said – OK you two docs, talk to each other. And Dr. Marsh told Sam all the orders he recommended and also they both approved my plan of being sent home with an NG tube. And OMG, the NG tube got put in, the placement confirmed with x-ray, the labs drawn, the meds in and discharge all happened in quick succession. We were out of the ER before midnight. Maybe less than 6 hours. Unbelievable. Shout out to all the staff, our nurse Isabella, Sam the attending, the x-ray tech, everyone, everyone was very nice, very fast and super competent. I was very, very impressed.

I feel so grateful I feel so comfortable in a hospital, I gowned Edda myself from the pile of gowns that turned up in a closet which I found, turned off lights when we were alone, turned off suction or oxygen when it was clear that we didn’t need it and was making a lot of noise so we could rest better. I know if you are a patient in a hospital, you don’t want to touch anything because everything is scary and new. I’m grateful I can work an NG tube and can help the nurse insert it, help the X-ray tech position Edda, look at the x-ray and see that the NG tube is placed well.

Edda sporting her new NG tube – it’s full of blood from her stomach because she swallowed so much blood from injuring her tongue.

I’m grateful to Seni who took public transit to come stay at the house overnight to feed/walk and keep Elka company. There is no one Elka loves more when we are gone than Seni. We are all at home now, recovering. Edda’ll have the NG tube in until she can eat properly again. She’s on extra strong seizure meds for at least 3 days as we figure out how to manage this new clustering of seizures that seem to be happening more frequently.

Jeremy is flying home tonight, can’t wait to see him! We are all hunkering down at home and taking it easy.