“Never say Never”

I can’t count # of times this saying has gone through my head in the last 2 years.

Last week we put Gabriel back on a medicine we had just weaned. WHAT?!?

Isn’t the goal to get him off all of these meds as long as we can remain seizure free?

Yep! That’s the goal and we are still seizure free-PRAISE GOD!

However, our sweet boy was a complete and total emotional wreck. He was spending literally hours a day in hysterical tears  unable to calm himself.

We are few days away from it so I can laugh about it now, but he literally cried and cried for over an hour because he did not like the screws that were holding the door latch in place. 🙂  Oy VAY! 🙂

After TONS of research and conversations with his various teams we decided to put him back on Valpo (no longer for seizure control but temporarily for mood stabilization). Instant change for the better. 🙂  Never say Never.

We are still adjusting things and I I imagine will be for quite a while.  He is still very emotionally fragile but at least now things that upset him make sense.  We are in the process of adding a child psychiatrist to his ever expanding group of specialists working for his good.

This has been one of the hardest periods we have been through on our journey. I really struggle anytime I feel like we are loosing his personality and ability to function in the world.  There are 3 distinct times this has happened. 1. When the seizures first started. 2. The first few weeks of the Keto diet. 3. The last few weeks. I am so thankful that things are seem to be moving in the right direction for now. Even if it means doing something I would have said we would “NEVER” do.

We have our follow up with the G-tube surgeon tomorrow, so I will post about that after our visit. The best news on that front is that Gabriel does not seem to have any pain associated from it anymore. 🙂 So far he is not at all self conscious about it either!

He is making great strides in both Occupational and Physical Therapy. He willingly practiced chewing, swallowing, and putting on shoes at his last OT appointment. Physical Therapist literally squealed with joy when he land an impromptu jump from one balancing contraption to another. It is something we wouldn’t  have ever asked him to do. He totally surprised us by the jump but  he STUCK the landing! GO G!. Never say Never 🙂

Gabriel’s surgery went very well on Monday. The hospital did a great job of preparing us for exactly what would happen and why.

Before surgery one of the workers from Child Life came by and showed Gabriel pictures of the surgery room on the Ipad. She did a great job explaining the things he would see and hear in terms he could understand. She let him practice using the breathing mask. She had a little kit with the different air fragrances and he got to smell the orange air beforehand (the scent he had chosen). It was great that he could have some of the sensory experiences beforehand in a safe calm environment.

We actually had nice family time while we were waiting. We used the iphone and listened to and sang his favorite songs….you know Jesus loves Me, You’ve Got a friend in me(toy story), let’s go fly a kite, and away in a manager (never enough Christmas music for us Russell’s!)

We said good bye and they wheeled him back. The surgery only took about an hour. They go in laproscopically through the belly button to place the device. His Mic-Key is about 3 inches to the left and 3 inches about his belly button.

After surgery he was fairly out of it and in a lot of pain. Neither Chuck nor I had thought about the amount of pain he would be in ;(. He is normally an uncharacteristically tough kid. He cried quiet a bit and reported he was sad and that the owie in his tummy hurt. While, these were difficult to hear, we were very thankful that he was able to communicate his needs and feelings! In our past hospital stays he has not been able to verbalize his experiences.

We were checked in a room and prepared to spend the night as planned. Shortly after getting checked in the room, his nurse informed us there was a possibility of us going home that day (if we wanted to). She was great and kept checking with us to make sure we were ok to go. It was pretty clear to us that going home the day of surgery is uncommon. Several hours later we felt confidant we could manage things at home. We got a very quick lessen on how to use the Mic-Key (G-tube), filled the pain medication prescription and were on our way! I don’t know if they needed the bed or what, but we were fine to go!

Gabriel has been a total trooper since we got home. He is VERY nervous about us touching his “Button” but after 3 full days at home he let us give him medicine through the G-tube without a fight. The first 2 days he rested or slept most of the time. He would occasionally get up and take a few steps, taking tiny steps and hunched over a bit. By the 3rd day he was up and moving around like normal 90% of the time.

The next step is for us to start supplemental feedings. We will start with basic pediasure and go from there to make sure his nutritional needs are being met. This is going to be much more complicated that we originally thought. We found out in the hospital, that he does not qualify for a pump to deliver his nutrition overnight. To qualify for a pump you have to be 100% tube fed OR prove that gravity feeding doesn’t work.

One of the main reasons we did the G-tube was to get the supplemental nutrition he needs. The plan was to do this with the aid of a pump overnight while he slept. So now we have to try and prove that gravity feeding does not work. We are going to try it but are not optimistic that it will go well because it entails him willingly sitting still for around 20 minutes a day, 3 times a day every day (with one of us there with him administering the pediasure).

If he did not have impulse and behavior issues that are currently not under control that would be fine, but that is NOT the case right now (that will be a whole different blog in itself…our last medicine wean has been TOUGH!). So we will spend the next 2 weeks trying and documenting, then send in a plea to the insurance company for the necessity of the pump.

Thank you for keeping up with us and praying for us! I know there a lot of details here. Sorry if they are boring 😉 I try to include things in our blogs that might help other families on the same path. I can’t count the # of times I have relied on the experiences of others further down the road then we are. I have found blogs to very helpful resources in our journey and pray that our blog is not only a record of us and a way to keep friends and family inform, but a light for those behind us on the road.

Gabriel Learning About G-Tube

First-the BEST news…Gabriel is officially down to 1-YES 1. Medication to control his seizures! In the last 2 years he has been on as many as 4 at a time (not including the diet!). So as of October we have weaned off the diet and 3 medications! AND NO Seizures! YIPPEE!

This last wean has been tough. G’s emotions are all over the place (especially inconsolably sad) and we are having to be careful to keep him safe. At the same time he has been better at communicating. He is singing FULL songs again (instead of only one line) and tons of other good stuff.

This Doose stuff is not for wimps! I remember when all we were focused on was STOPPING the seizures. I naively thought that if we stopped the seizures everything would be back to normal. Not quite 🙂

I am so glad the seizures have stayed away for so long but the reality is there are many health concerns that have come as result of this syndrome and the seizures could come back at any time. Right now we are focusing on muscle tone and coordination issues. We are focusing on his chewing and swallowing muscles a lot in Occupational Therapy. It was surprising to me that epilepsy could cause eating issues, that lead to aspiration, chronic congestion and pneumonia! We are blessed to have great medical professional working with us to help find solutions!

Gabriel is scheduled to have a G-tube inserted on Monday. We are excited and nervous about the procedure. We are excited because it will give us good options for making sure he gets both nutrition and medication that do not rely on weak muscles to do all the work.

We are nervous because it is surgery, under general anathesia. Along with the normal concerns anathesia can cause seizures–either right away or as an after effect.

All of the pre-op appointments have been wonderful. We met with the surgeon, he was very nice! Kind, compassionate and patient. They used us the device Gabriel will have. It is called a Mic-Key. They had a special dolly that we got to practice using the MIc-Key with. Gabriel especially like this.

Please pray for a smooth surgery with no complications and no seizures. Pray that Gabriel does not fixate on the Mic-Key and try to pull on it. Pray for us to peace while Gabriel is in surgery and away from us.

Thanks 🙂

I