G-tube 2

As you might have guessed from the title, we will now have two people with g-tubes in our house. Andrea and I took Reuben and Mira for their 6-month appointment with their neurologist. Mira's appointment was very quick and she graduated to a 1 year appointment interval.

Reuben, on the other hand, was given instructions to be admitted to the hospital for a g-tube placement as soon as they could get him in. Reuben was having so many seizures during the appointment that his Dr. did not feel he could in good conscience send Reuben home for a later follow-up appointment. So Mira and I dropped Andrea and Reuben off the Gillette's main building/hospital and then continued on our way home. For some time Andrea and I have felt that a g-tube was going to be in Reuben's future and as we were driving to the appointment yesterday we both commented that there was a very real possibility Reuben was going to get send directly to the hospital. We were right!

His seizures have been getting bad enough, that it took me 10 minutes to get 6.5 mls of medicine into him because he was not able to swallow. Eating and drinking have been very difficult because the seizures are so close together that he get stuck with food or drink in his mouth and then drools it out when he loses control of his mouth with the next seizure. So for safety reason and weight gain reason, the g-tube was the way to go, even if we were not going to start the ketogenic diet. However, we also determined that the ketogenic diet is likely the best option for Reuben at this point. Anti-seizure meds do very little for Reuben or other people with Ring 20 Chromosome Syndrome. Some people with his condition to get some relief from the ketogenic diet.

Yesterday and today have been filled with conversations with the dietician as we try to figure out how to start introducing the ketogenic diet for Reuben. His current diet is mostly carbs. Break, nutella, chocolate milk. The ketogenic diet is mostly fat. Eventually they want him on a 3:1 ratio of fats to carbs/protein, but that will require a 3 to 4 day hospital stay so they can monitor blood sugar levels and other indicators. In the meantime, he should be coming home tomorrow on a 1:1 ratio that will hopefully start giving him some of the benefits of the diet while not requiring the next hospital stay right away. Luckily Andrea is very good with numbers and enjoys that challenge of figuring these types of things out!

Yesterday they also did an EEG to check Reuben's "new normal" for brain activity and establish a new baseline before we start making changes. The report is that he is technically in "status epilepticus" where his brain is showing some seizure activity continuously, even if it is not visible on the outside.

After getting all the electrodes on for the EEG and getting his fancy hat, he spend some time reading books.

And he also got to spend some time with the "balls" that he loves watching.

So, right now, he should be in surgery for the placement of the g-tube. Andrea or I will post an update when he gets out of surgery.

Last night he has some large seizures and did not sleep very well. However, this morning he had 3 siblings join him to keep him company.

How many kids can you fit in that hospital bed?

and under the hospital bed!

Reuben got hit pretty hard with a large tonic clonic seizure during some imaging they were doing and then fell asleep while waiting for the procedure to start.