Life Changing Surgery

Rayleigh Bug spent a week in the Children's Hospital in late November. Her seizures have progressed into some really nasty monsters. She's having around 15 a day, most of which are almost 2 minutes long and she holds her breath for the first 20-30 seconds. It's all very terrifying. Unfortunately, because of this seizure type, our Bug has had some regressions. It happened slowly, first she just wouldn't use her hands to hold her sippy cup but over time she reached a point where she wouldn't open her mouth for bites of food or sip out of her cup or a bottle. We were in a scary place, Buggie was losing weight and seizures were increasing. We scheduled appointments with GI and a swallow study with speech therapy to see what was going on. Too soon though, I was having to use a syringe to squirt high calorie formula into her mouth. The pediatrician set us with a goal of 1,000 mls a day until our appointments which were over a month away.

Then things got worse, if you can imagine. Rayleigh began vomiting a few nights a week. Usually small amounts after seizures but occasionally it would happen seemingly out of nowhere. I informed her pediatrician and were admitted to Children's Hospital and knew we were on track to get Rayleigh a feeding tube.

We spent one week at Children's. During that week the GI team ran a swallow study, upper GI study, and a gastric emptying study, they also went ahead and inserting an ng-tube (feeding tube through the nose directly down into her stomach) and started feeds to see how well she would tolerate the bolus feeds vs. continuous feeds. Ultimately, they concluded that Rayleigh is aspirating on liquids, and she is likely vomiting because her tummy gets too full too fast so when she has a seizure she loses control and it comes back up.

Rayleigh got a surgery date to get a fundoplication and a mic-key button g-tube. The fundo is a procedure where the surgeon will pinch a piece of the top of her stomach and wrap it around the opening to make it tighter, make it less likely for her to lose control and vomit after a seizure. This is necessary because each time she vomits up, she risks aspirating and that means it would go into her lungs and could cause pneumonia. Luckily, we caught this very early on and can help prevent that now! 

They sent us home for a week with the ng-tube and everything we needed to do continuous feedings until the surgery date which was 1 week away. 

Here we are, 1 week later.

Rayleigh had the surgery yesterday. The Lord watched over and it went perfectly. There are some rare negative reactions that we will need to be on the lookout for over the next few days and weeks but everything is going really well at this point! We are looking at going home as early as tomorrow, but likely Sunday. The doctors want to make sure she can tolerate the clear fluids, Pedialyte, that they have started her on this afternoon at a small drip that will increase every few hours and then overnight or tomorrow morning they will start formula feeds following the same routine. If she tolerates the formula well we will get to go home! 

Please continue sending your well wishes to Rayleigh. We are controlling her pain with Tylenol and Morphine and so far she is sleeping through most of her healing which is a blessing! 

No Results But a Few Changes

That's right, we STILL don't have the results. I am still one very frustrated mama and just wait, it gets worse.

So I've still been calling the epileptologist's office weekly to check on the results but they have no updated status for me. So the nurse called the labs and said she still has no update for me. Then last week she said that she spoke to the epileptologist and he said that if we do not have the results of the genetic test by October 2nd (Bug's next appointment with him) then we will re-draw the blood and send it out all over again. UGH!

So it sounds like her blood is MIA.

To be clear, the nurse said that the re-draw will be at no cost because this was not our mistake. Obviously. There is no way we can pay that all over again, we went through lots to get enough money to do it in the first place! (Thanks again to everyone who helped!!)

In other news, Bug has really not eating well. She takes the first few bites of a meal and then starts crying, whining, spitting, choking, using her hands to push us/the spoon away and using her tongue to push food out of her mouth.

Bug is on the 3.25:1 ratio (lowered again since last post) and her ketones are still high 160 but she still has to take 2 Prevacids a day to keep the reflux controlled or she vomits. I'm really not happy about her having to take 2 Prevacids so I'm going to see if we can keep lowering the diet ratio.

We have an appointment Monday with her pediatrician to talk about her eating habit and discuss the option of the G-Tube. I've been doing a lot of research on G-Tube recently and I'm not too excited about the idea but if it's what Bug needs to get nutrients and stop losing weight then it's what we'll have to do.

I'll do a post after her appointment to let you know what we talk about and what we can do to get her eating again.

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Bug's current medications & control:

• Ketogenic Diet 3.52:1 ratio
• Onfi/Clobazam, 10mg: 1 pill 3 times a day
• Lamictal, 25mg: 3 pills twice a day - just started this dose today, full dose

Bug's seizures have gone from 4-5 a day to 1-3 a day, so a small improvement. They continue to happen mostly at night after she falls asleep. Bug is still not taking naps. She has been very irritable the last week, could be from the diet ratio change or the tummy problems. She just cut a molar and has one more to go but it doesn't even feel close so we're just waiting on pins and needles for that little monster to start bugging our Bug and pushing through.