Made it home

We did indeed make it home JUST in time to make supper for Owen's birthday. Owen was ready to remind me that his birthday wasn't nearly as important as being home on Monday to take him to get his learner's permit! As mom, being here for both was better. 😀 Owen passed his written test yesterday, and has already logged 30 minutes of driving. Reuben is doing better day by day, but we're still having a hard time getting the entire recommended diet into him each day. We can hit about 75%, but when we go past that, he vomits.😟 As his surgeon said many times, Reuben has a VERY small stomach - likely the result of not eating very much for quite a while. Today was our best day yet, and his energy continues to increase. He does still feel quite uncomfortable at the surgical site, as evidenced by the way he moves, but he is moving around, which is good!

Best of all, he hasn't had any seizures that we are aware of since mid-day Saturday!

Home on Feb 1?

Everyone here knows that our big big goal is to get me and Reuben home today and not have to wait until Sunday.

Matt messaged me yesterday with this photo saying, "Tell them you ARE coming home [Saturday]."

Thank you, Eben. If you look close you can see that he's sampled pretty much every slice.

Saturday (today) also happens to be our first-born, Owen's, 15th birthday! Especially when you consider that I've already been staying in the hospital with one of his siblings for a g-tube placement surgery (among other things) over his birthday three years ago, it would be really nice to be able to come HOME for this one!

Reuben is tolerating what they're putting through his g-tube very nicely. They're now working up to larger and larger bolus feeds every few hours of the keto formula aiming for 240 ml in an hour and then from that side we're clear to go home.

He's still mostly non communicative, but looks overall MUCH better than yesterday. We couldn't really see a difference before and after surgery, but he looked just horrible yesterday.

Surgery complete

Sitting with Dad before surgery in pre-op.

Ebenezer also got a chance to snuggle with dad in pre-op!

Just a quick update that Reuben is out of surgery and back in his room. He had a rough night last night with lots of larger seizures and this morning was pretty much unable to do anything or even communicate. Back in his room this afternoon after surgery he was at least able to interact a little bit.

Eben and Evania and Gloria did great job hanging out at the hospital again all morning and into the afternoon today.

They said he might have a large rash of seizures today after coming off the anesthesia, but so far he seems to be doing pretty well.

Sweet boy resting in his room after getting out of the recovery room.

If all goes well, he and Andrea should be returning home tomorrow.

Just got a text from Andrea saying that Reuben spoke his first word since coming out of surgery. "Bible". He never goes anywhere without it (except into surgery!)

G-tube 2 Update = New Date

Got an update from Andrea around supper time tonight that the surgery has been postponed until 10:30AM Friday morning. His original slot was 9AM Friday morning, but they thought they could get him in this afternoon. Ends up that didn't work and there is actually one other child in front of Reuben tomorrow morning.

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.

A blessing

This past week I [Matt] have been able to share with a number of people how Reuben is being protected by God in the midst of some difficult days.

Shortly before Christmas, Reuben's seizures took a twist. They often do this every 3 to 6 months and we arrive at our new normal. This time the new normal is hundreds of seizures every day...heading for a thousand a day, but probably not quite there and we are not even really trying to keep track at this point. They are nearly continuous all day and all night long. However, they are for the most part short partial seizures where he is still conscious and only loses control of a part of his brain/body. Then there are a few drop seizures and few generalized/tonic-clonic seizures scattered in the mix.

What I have shared is that every night when I take Reuben up for bed, we read a book and then I pronounce a blessing over him and then we sing. The blessing is the same every night.

May the Lord bless you and keep you.
May the Lord make his face to shine upon you and be gracious to you.
May the Lord lift his countenance upon you and give you peace.

Some nights it almost seems wrong to pray such a blessing over him when he has been seizing all day long and is periodically seizing while I am blessing him. But then again, it doesn't seem wrong and in fact God has fulfilled the statements in the blessing.

The things mentioned in the prayer above are not about circumstances. They are about a state of being. You can be in difficult circumstances and still experience God's face shining on you and Him being gracious to you. You can have peace, even when everything seems to be going wrong.

This is indeed what I see in Reuben. By this point in his life (prior to this new normal pattern) he had experienced thousands of seizures. Now he is racking them up really fast. And yet, he is still the personable Reuben we all know and love. He keeps getting hit over and over again and he just keeps getting back up and picking up where he left off. Reading a book with him his head will droop down and his lips will quiver for a few seconds and then his head will pop up and he will point at the page and say something about it and we will continue on. Walking around the house, he will just lock up and not be able to move his feet, so you just hold him until he "is back" and then you keep walking. No fussing, no complaining...just get back up and keep going.

Over the past week Reuben has had a few drop seizures that have landed awkwardly and even with his helmet on, have still managed to draw blood on his jaw line. Nothing too serious that a little ice, some tylenol and a bandage could not handle. They hurt and he would cry a bit and then be going again.

This morning it was a bit tougher...he didn't just get back up and keep walking...at least not right away. Shortly after breakfast one of the drop seizures hit and Reuben fell forward to the floor totally limp. His chin took the worst of it. The first glance told us we were not going to handle this one at home. Luckily Leah was able to cover the home-front so I could drive while Andrea sat in the back with Reuben.

Reuben was a champ in the triage area of the ER. Holding out his arm for checking his blood pressure, holding out his finger for the pulse-oximeter. They applied numbing cream and got us into a room to wait for that to take effect before coming in to take a closer look. So, Reuben and Andrea sat on the bed reading books and taking selfies...including a selfie video where he has a partial seizure during the video and is actually laughing at himself as he sees himself having the seizure on the screen.

Reuben did great as they put in two internal stitches and seven external stitches. That numbing cream is pretty amazing, he didn't even flinch while the Dr. did the stitches. She actually tried to do most of them while he was having a partial seizure so he would not be aware of it. After they were done, we asked Reuben if he was ready to go home and his response was "No". He was having a fine morning hanging out with Mom and Dad at the hospital. We came back home and made sure he always had someone close to him while he read books, played on his iPad and watched some of his videos on the computer.

There was some crying after it happened because it just plain out hurts to hit the floor face first with no muscle control or awareness to slow or break your fall, just face first onto the floor. But after that, Reuben was just back to his normal self. So no, Reuben's circumstances are not great, but Reuben does appear to have the peace of God surrounding him.

Reuben post-script

Reuben's partial seizures tend to get worse as the day goes on, so after having to tell him yesterday that, no, he couldn't go out with Daddy and be in the snow while Dad shoveled (because we didn't have an extra set of hands to help hold him up!) it was an absolute delight this morning when Dad was out again and Reuben asked again, " 'no? Daddy?" to tell him that, yes! he could go out and join Dad! I bundled him up, and about 20 minutes later dad was done and the two of them came in. Reuben can't see a thing with his hat over his eyes, but we can all see the smile of delight on his face.