G-Tube, Keto and beyond.

Alright.  So, it's been a while since I've had anything of note to post on here and sadly what I have to post isn't all that good. But it isn't all that bad either. Once again Dinky is back in BCCH and we've been here now for a good handful of days. Let's just say that he decided to have a seizure that took a long, long time to get under control so our Ped had enough and sent us back to Children's hospital.

Since we have been here there has been some actual progress and successful doctors meetings. I've been quite impressed with how serious everyone has gotten over Dinky's poor feeding. He's been NG fed down for...I'm going to say 5 days? I can't remember exactly when things happened that way. At first he was on a continuous feed, meaning he was getting 10ml feed over an hour all day. Which got moved up to 38ml/hr for a full 24 hour period. He then moved to bolus feeds. Meaning he gets larger feeds over a shorter amount of time. He first started with 150ml over 3 hours with an hour break. Then he moved to 2 hours with 2 hours, then an hour with a 3 hour break between feeds. Now my little chunk-a-monk is up to 150ml/30 minutes.

Which is amazing that he's tolerating the feeds as well as he has been. For the first couple days he had to have blood work every day to check to make sure that his body was able to handle all of the food/nutrition that he was all of a sudden getting because he had had such poor feeding for the longest time. Proud to say that it's been a few days since he's had to have blood work! Our little superstar champ!

Since we have been here we've had a couple of studies done. Thursday he had a GI study with the barium drink to see what was going on internally. Meaning what is going on with this throat/stomach/intestine, checking to see if there were any abnormalities in that regard which could account for the poor feeding and hard time he has had feeding for the longest time. It turns out that he has what is called a vascular ring around his esophagus which is causing a slight narrowing. Whether  that is an actual cause for problems or not is still undecided as there are quite a handful of teams that need to come together on this and look over/watch the video study that was done.

Monday we had a formal feeding study done. That involved Dinky taking a few different textured feeds and seeing the mechanics of his swallowing, to determine if there was any danger of aspiration or reflux and to see if there were specific textures that he could easily swallow. That study showed that he does have some risky behaviours while swallowing, but at this time there is no cause to completely cut off his oral feeding. Yet as of right now we are still completely feeding via his NG tube until everyone has 100% decided if his feeds need to be totally tube only or not. We have talked about and discussed a G-Tube and yesterday I met with a general surgery resident to discuss this next step. It was actually reassuring because he came in and asked me how I felt about it, whether or not we as a family are together on this before he told me his professional opinion. And he, as a professional, feels that the G-Tube is the way to go at this point in time. Good news is that it isn't permanent. It's reversible and it doesn't need to stay in for the rest of his life.

This also provides us a way to maintain and make sure that Dinky is getting all of the proper nutrition and feeds into him that he needs because for the last while it was a huge struggle and challenge to get him to eat properly. So all around this is a win as well.

((Some time in the last few days we were moved into Isolation because our knucklehead decided to pick up a cold since we have been here. Means I get my own bathroom which is wonderful! Also really cuts of the whole...human interaction that one gets while in the baby room. But I have my own bathroom and WAY more room. And I am able to watch whatever I want via Netflix without having to worry about little people's ears. Dinky doesn't care (haha) with what we watch. Except Dinosaur Train. The kid loves that show! So we watch a lot of that as well.))

Monday we also met with a few people from the Ketogenic diet team. So we spent close to probably 90 minutes talking about the diet and what exactly it means to be on it. The type of epilepsy that Dinky has is very hard to medically control for the most part. Myoclonic epilepsy has been known to be more responsive to this diet which is a wonderful factor. Except the diet in itself is extremely strict. What it is is a high fat low protein/carb diet. Meaning that it's 90% fat, 5-7% protein and 3-5% carb. Talk about the fat content! This diet forces your body to stop burning carbs for energy and forces it to burn fat instead. Your brain has a survival switch in it so that it (could) potentially stop the seizures that he has. Being so young still and not relying on solid food makes it a bit easier to handle as all we need to do is formula, vitamin supplements and a couple medication adjustments. It also means that he cannot take any OTC medications. No Tylenol/Advil/Gripe water. Nothing that has any kind of sugar in it.

It also means that he will be needing rather frequent blood tests to check for lack of proper vitamins/minerals, cholesterol checks and what have you. I'm not overly impressed with that but if it can help him it's worth a shot.

Hopefully we know today or tomorrow if the G-Tube surgery happens on Friday or not.

Now that that's cleared up, let me make a few points:

-- Dinky is EPILEPTIC meaning we  have NO IDEA what is causing his seizures. I am so sick of everyone asking me if we know what is causing his seizures. He has EPILEPSY. THAT is what is causing his seizures.

-- Yes, we believe that his epilepsy is a secondary condition to whatever genetic condition it is that the has. Which brings me to another point. We DO NOT KNOW what his diagnosis is yet. And we WILL NOT KNOW for some time yet. All of the tests that he had done in January have come back empty handed. Bothersome, yes, but it is what it is.

-- Yes, that means more tests need to be done at a later point in time. No I don't know when they're going to happen.  

-- Yes, he MIGHT grow out of his epilepsy or he might not. And no we do not know if he will or will not.

-- Yes, answers would be really nice to have but we do not have them. Genetic problems and issues can take a LONG time to figure out. The medical field can only study so much and every day they are making new breakthroughs. Genetics and genome studies are still a relatively new fields and there is only so much that they can study/test right now.

So now that that's been said, I need to give some serious props to my husband and mum. They both step up so much every time we have to come down South that I'm so lucky and blessed to have them. Also to my amazing support team that we have at home. Our IDC is working so hard to make sure that all of our bases are covered, calling different programs and groups to try and help us get on the AHP (at home program), making sure that the person in charge of our application with the AHP is constantly up-to-date with our visits down here. I text her often, a few times a day with anything new that has happened.

My support system and network both professional and personal... I don't know what I would do without them. They're the reason that I'm able to keep strong and just keep swimming.

I miss my kids. I miss my family. I miss my kids... I cannot wait to see my minions. I sure hope that Husby is able to take the time off next week and come down here with them so that we can start our summer vacation a little earlier than planned. Yet at the same time it's so hard to make plans with everything else that is going on. Yikes!!

This is a novel already. I should probably stop and leave it where it is.

Also, on a friendlier note.

I got my Learners again. Meaning I can drive again. Meaning people can stop riding my tushie about driving. So there. Never-Neener. Look out world. I could be on the road one of these days. Just what we need. Haha!

A mind twisting thought train

Our IDC from the CDC called me late yesterday afternoon to discuss more at length about what has been going on in regards to Dinky. She mentioned that she had spoken to our OT about the upcoming G-Tube and our OT seems to be almost against it, stating that we should be going in for a proper feeding study and assessment before taking such a drastic measure and feels we should push back against our Ped's wishes because a Gtube could cause oral aversion. Meaning Dinky will learn not to take anything by mouth or have a huge fight against it.

And I understand her concern because as his parents, Husby and I have the same concerns as well. But let me break it down like this.

 Since April 29th, he has been on 10 day antibiotics. Twice. Meaning that in the last 5 weeks, he's had 20 days of medication to help clear his lungs out and try to hold them off from developing into something much worse than slight aspiration. Pneumonia is a very common problem for children that aspirate formula. Why? Because formula (or most of it anyway) is dairy based and all formula contains fat. Thus, if dairy or fat or both get into the lungs and is allowed to settle even for just a few days, pneumonia is more commonly the result from that.

Dinky has been on 20 days of antibiotics. For that reason.

A NG is a tube they stick into your stomach by way of the nose and down the back of the throat. They're irritating. It makes swallowing uncomfortable. It makes breathing uncomfortable. Even the simple taste of sucking on fingers is annoying thanks to the flexible tube jammed into your face. And let's face it. They're super easy to rip out. Remember when Dinky had RSV and he had an NG for a week? He pulled it out. 5 times. That's 5 times he had to go through the procedure of having someone hold his head and having another person quickly and deftly slide the tube up his nose and into his stomach. Not to mention a NG tube comes with a LONG tail that gets tangled up, stuck, caught up on things and is super easy to hate.

A Gtube is a tube they surgically place directly into the stomach so that you have a small button externally to hook the extension up and feed. Once done, you remove the giant trail of tubing and this allows for greater freedom to be carried, cuddled, roll around, bathe...play. But it's a small surgery. It's a scary thought that someone wants to go and place a small hole into our child so that he can eat.

OT doesn't seem to understand this.

So. Watch this.

April 24th, he was 6.91kg.
April 29th, he was 6.64kg.
April 30th, he was 6.65kg.
May 1st, he was 6.74kg.
May 4th, he was 6.77kg.
May 9th, he was 6.88kg.
May 14th, he was 7.04kg.
May 20th, he was 7.18kg.
May 25, he was 7.1kg.
May 27th, he was 7.02kg.

See that weight loss? That's 6 ounces in a week. Lost. Again. I don't even want to take him in to get weighed. I don't want to see what the scale has to say. I have now become a giant baby putting him on the scale. Hopefully Husby is home on Thursday when our Ped is in office so I can call him and let him know what his weight is doing. Can I just stomp my feet and throw a tantrum like some over-tired toddler that has so many emotions that they just explode because they don't know how to deal with such big feelings?

That's what I feel like.

I have a toddler. Trapped in my head. Screaming and crying and having a full blown melt down every time I think about this Gtube. Toddler me is sitting there wailing, all snot faced and sticky, tomato red with anger and frustration. And there's adult me, in my brain, sitting at a table going "Oh, hush you giant annoyance. It's just another thing to add to the list of already overloaded things to do. We'll deal and cope. Because that's what we do. We cope. We deal. We learn. We will survive this." Then there's toddler me, screaming even more because that's yet another thing that we will have to learn. And do. And clean. And have to watch.

It's like there's a party of responsible and irresponsible warring in my noggin. And as always the adult side wins. Even if I do want to throw things  around, stomp my feet, scream and cry. Problem is, if I start crying I'm pretty sure I won't know how to stop. So I cope. As I always have. I have this tendency to just accept things as they come, stand up under the weight of this and take charge.

Even if I want to poke it.
In the eye.

With a spoon and go neener-neener-neeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeener you're a silly wiener.

Mature, right? I'm talking about the adult part. Anyone going neener-neener isn't exactly in top adult form.

So let me assure you that in no way at all, are we actually going into this without fully thinking this through. We know exactly what's going on. We KNOW. We've weighed the pros and cons.

We aren't dumb. It's scary as hell. But we'll do this. Like we do everything else.

Kitchen Fails

Have you ever set out into the kitchen with all kinds of good intentions thinking to yourself, hey I can make 12 miniature pies in my muffin tin for a good little dessert it can't be that hard? Only to find out that it is a heck of a lot harder that it should be? Has that ever happened to you? No? Am I the only one out there that seems to screw up pastry with a scary sense of ease? It's pastry. Not rocket science! Turns out, I can screw pastry up. Even following the recipe perfectly. I have NO idea how I can screw something so simple up. It's mind boggling. I can make cakes and cookies like a pro but give me pastry and it seems to be hit and miss.

With more misses in my pastry belt.

So what was wrong with my pastry? It was crumbly. Even with the allotted amount of liquid added to it, the blasted stuff was still crumbling. Put it into the fridge thinking that would help. Idiot. Try blending in more liquid. MEGA idiot. Turns out if you cannot make it perfect the first time it turns into a weird slimy goopy mess. I'm sure a slug could have slid off of the mess I tried to call pastry.

I wasn't happy. I took the offending mess and threw it all into the garbage with a satisfying thud. Take that you piece of goop. I hope you have a GREAT time being eaten by birds you horrible crap.

Can you tell that kitchen failure really grinds my gears?

Plus side is, the same day I made terrible pastry a friend gave me this amazing pizza dough recipe that was SO easy and turned out just perfect! Now that is a recipe I was impressed and proud of. Because pizza dough and I have an even worse history then pastry dough!

So, moral of this blog post?

I hate pastry.