Gastro Update

So yesterday Dylan had his first Gastro appointment since his diagnosis of Microgastria. I wasn't expecting much because I have never really gotten any help from any of the Gastro team in the first place. If it was up to me, I wouldn't even take him to see them anymore, but unfortunately I have to, because they are the ones I have to "prove" to that Dylan doesn't need the tube in order for them to take it out.  I went into the appointment hoping to maybe get some more information about Microgastria, since there is not much information or people to talk to about it out there since it is so rare..... and just as I had thought, they didn't have any information for me. The nurse practitioner that we saw said she didn't know much about it at all, but that she would put out an email to her colleagues and see if they knew of somebody that has more knowledge about it than she does, and get back to me. 

The good news is that Dylan gained weight. Not much.... but it's still a gain, instead of a loss.  He gained an ounce in about a week and a half.  They want him gaining more than that. I told her that the last time we were there, the doctor had set requirements for Dylan to meet in order to get his tube out, and she started to say  " .... yeah, it looks like its just gonna take a little more time to meet...." ..... I stopped her mid sentence and said " No... It's not that it's going to take more time... It's that it will never happen. Dylan will never be able to meet your "requirements" , his stomach is just physically to small and cannot hold the amount of volume that you guys have set for him. His stomach is not that of a "normal" child his age, and instead of him having to try to meet your requirements, you guys are just going to have to adjust YOUR requirements to Dylan's stomach." ...... She just looked at me, but then agreed.  So the requirements for Dylan to be able to get his tube out, is that he is taking everything by mouth, including his medications, and gaining a certain amount of weight on a consistent basis for at least 6 months.   I find that very attainable. I have already switched him to doing his Medications by mouth, they only one I have a hard time with is his Prilosec because it tastes nasty, so the doctor changed him to Prevacid because its supposed to taste better. I hope that it works and its not too horrible for him. Now that we have changed his tube and there is no longer a balloon taking up his whole stomach, he has been drinking a little more from his bottle at a time, so this is great!  We are adding Duocal to his formula to bump it up from 20 calories per ounce to 30 cal, so that should help with weight gain as well. I'm continuing to feed him solid foods, as well as blending up some of his meals to make sure that he eats it all and is getting the nutrients that he needs. We have to go back to GI in two weeks for a weight check.  I'm not sure if we'll have to go every two weeks or if we can spread the checks out a little bit.  We are also doing some stool tests to check for malabsorption to make sure that since his stomach is so small, that he is absorbing all of the nutrients from his food and that its not just passing through quickly.  Being the one responsible for making sure that Dylan is able to fit in all of the nutrients and calories that he needs to grow each day, and having to "answer" to the doctors on what im doing, when im doing it, and how im doing it, is stressful, a lot of work, and overwhelming at times.......... But I can do it.  If it means being able to get his tube out in six months, then its worth it.

Instead of doing a separate Mothers Day post, I will just post a few pictures here.  Last Mothers day, Dylan was still in the NICU hooked up to PGE waiting for his Norwood. THIS mothers day, we were out of the hospital, wire and monitor free!  We celebrated by starting the weekend off at Sea World, and then taking him to the beach to try to get some good pictures.  It was really cold and windy so we didn't stay long.... but long enough to let him put his feet in the sand and water ..... which he wasn't a big fan of. :-)   We got some good pictures, and it was the best mothers day ever! <3

Me and my Momma <3

 

Taking things into my own hands.

WOW. First off, I want to apologize for neglecting this blog! SO much has happened since my last post, and I apologize for not documenting it. I especially apologize to the newly diagnosed parents who are searching the web for stories and connections to families who have babies with HLHS. I know that is one of the first things I did when we got our diagnosis and I am sorry for being such a slacker and this blog not being a very good source of help. Just know that Dylan is still here FIGHTING like the little fighter that he is. He just turned 1 year old two months ago!!  His cath that I spoke of in my last post went well. They were able to balloon open what they needed to, and he has pretty much been good Heartwise since then. It's his Gastrointestinal issues that we have been having problems with. He is a very happy little boy. Hes crawling now, and taking steps on his own, he will be up and running in no time!!  :-)  That being said......  It's been a very rough week of doctors appointments and testing and findings.... so I guess that's why I'm back here posting right now. There is a lot going on, and SO much on my mind, and if I don't write it all down somewhere, I'm gonna break down. So here goes...........

I'll start with the Gastrointestinal stuff.  We have always known that Dylan has a small stomach. His surgeon told us that when he put in his G tube he noticed that he had a very small stomach, even for a baby of his size at the time. Ok.... so he has a small stomach.... that's ok right?  Not a big deal. Little did we know... it is a big deal... a very big deal.  We have ALWAYS had problems with Dylan's G tube since pretty much day 1 . Three weeks after it was put in, the balloon popped and we ended up in the Emergency Room.  I can't tell you how many times since then that his balloon has popped or sprung a leak. I understand that it is a balloon.... balloons pop... I get that, and different factors such as the meds they take or the acid levels in their stomach also effect the balloon and can wear it down a little faster than others.  That is just something that comes along with having a G tube.  But I ALWAYS felt that something was wrong. That there was a reason other than the things mentioned that was causing Dylan's balloons to pop, but nobody would listen to me. I kept telling them that there has to be something IN his stomach causing it to pop so much .......... I didn't know what I was thinking it was, but i thought it was something... because Dylan's tube would also seem to get "stuck" all of the time.... it would be sucked into his stomach so much that it was indenting, and i couldn't turn it.... and then all of the sudden it would release and kinda " pop" back out. I thought maybe it was getting stuck on something inside his stomach, maybe his ribs, or SOMETHING. I mentioned this to EVERY doctor that we have seen since Dylan has been born, and they all just look at me like I'm crazy, and say " Hmmm, yeah, that's weird" ..... and kinda brush it off.  So of course, I start thinking that maybe I AM crazy, and that I really don't know what I'm talking about..... But i continue to make sure I mention it at every appointment we have.  FINALLY somebody listened to me!  I was NOT happy with the GI doctors that we had been seeing so when the clinic got a new GI doctor who is supposed to be really good at setting up plans to wean kids from the G tube, I quickly made an appointment with him.  At our appointment he sets a feeding schedule that he wants me to put Dylan on .... he wants me to feed him every 3-4 hours, and he wants him drinking 4-5 ounces in a 15-20 minute period.  SERIOUSLY??  I can only get Dylan to drink 2-3 ounces in a 2 HOUR period.... there is NO way I am going to be able to get him to drink 4-5 ounces in a 20 min period..... that's just crazy. But I would give it a try.... what other choice did I have?  Before we left his appointment, I AGAIN mentioned the tube seeming like its getting stuck and sucked in, and he looked at it, and told us that it seems like it's too close to his ribs, and that it probably has to be moved and replaced in a different spot. Not that answer I wanted to hear, because that meant another surgery to move the stupid tube that I wanted GONE in the first place. So we made an appointment with his G tube surgeon to talk to him about the placement and if he thinks the tube needs to be moved, etc.  I explained to his surgeon what I have been trying to explain to everybody the entire year, and he knew exactly what was causing it, or at least he was pretty sure he knew what was causing it, but he wanted to do an Upper GI Xray just to get current images, and verification of what he thinks he saw on Dylan's last Upper GI from six months ago.  We went in for the Upper GI the next day, and then back to the Surgeon to discuss results later that afternoon. It was confirmed that Dylan has Microgastria.  Its an extremely rare stomach anomaly where Dylan's stomach is extremely small ( can only hold a little over an ounce before being full ) and is shaped differently. Instead of being short and round... his is long and tube like, so the balloon from the G tube was basically touching the front and the back of his stomach and causing somewhat of a blockage. when the stomach contracts, it was grabbing the balloon and trying to push it down into the intestines for digestion. Microgastria is so rare that there are less than 100 reported cases since it was "discovered" in the 1800's.
So with this knowledge and diagnosis, I tried making an appointment with GI and Nutrition so that they can adjust their "requirements" for him getting the tube out, and for them to adjust their feeding plan based on Dylan's stomach... not what a "normal" kid his age "should" be eating/drinking, but I can't get in to see them for like two weeks. It's ridiculous really. I'm so fed up with GI and Nutrition, that I've decided to take things into my own hands.  I have come up with MY own schedule and MY own way of feeding him, and when I go into my nutrition appointment in two weeks, I'm not going to let them tell me how I need to feed them........ I'm going to TELL them what I'm doing, and how and what I'm feeding him, and if they want to monitor us, they can...... if they don't want to, then screw it... they haven't been any help to me this whole year anyway!  I AM getting Dylan off of his tube.  There is no reason for him to have it.  He doesn't have an oral adversion. He knows how to drink, how to eat..... He just doesnt eat or drink as much as they want him too, and now that I know the reason why he has never and will never be able to meet their requirements, I'm making my own requirements for him to get his tube out. As long as I can figure out a way to give him the nutrients and calories that he needs daily, and he's gaining weight..... the tube is gone!  I've already started giving Dylan his medications by mouth this week instead of by his tube.

So here is my plan. I've been researching and I know that a baby Dylan's age needs about 1,000 calories a day. They want him drinking 20 ounces of formula a day, which equals 600 of his calories. In order to get the nutrients and vitamins that Dylan needs from food, he needs 1 cup of Vegetables, 1 cup of Fruit, 3 ounces of Grains, 2 ounces of Meats,Beans, and Nuts, and 3 tablespoons of Fats.  Now there is NO way that Dylan would be able to consume all of that solid food in one day due to the size of his stomach.  So my plan is this..... I am still going to feed him solids and let him eat food because I don't want him to loose the textures and the ability and want to be able to chew and eat..... but I am also going to take all of the fruit, veggies, grains and protein requirements and puree them into 3 little meals. Breakfast, Lunch, and Dinner will be purees of all of his nutrition requirements for the day.... and little snacks in between will be solid food snacks that he can eat..... this way, if his tummy is too full and he doesn't wanna eat the solids I give him throughout the day, it doesnt matter because I know that he is getting all of his daily nutritional needs during his Breakfast, Lunch, and Dinner that I make him.  As he grows, I am hoping that he will be able to fit more solid foods in his tummy, and he won't need to have the pureed food, but only time will tell. I want him off of the tube. There is no reason for him to be using it, because even if I was using it to give him his formula, I can only give him so much at a time anyway because he tummy will only really hold as much as he already drinks from his bottle. All this time, it wasn't that he wasn't drinking 8 ounce bottles because he didn't want to.... it is because he physically can't drink an 8 ounce bottle..... not even a 4 ounce bottle at once....
So this is MY plan to get him the nutrition he needs to grow and be healthy, and to keep him comfortable by not forcing formula and food down his throat.

We are trying a different G tube that doesn't have a balloon to hopefully fix the problem of his stomach trying to digest the balloon. The one we are going to try still has a little plug but its smaller than the balloon, so our hope is that the stomach won't grab a hold of it.  If this doesn't work, they are talking about doing another surgery to have a PEG tube inserted which hangs on the outside of his stomach.  I DO NOT want that, especially since he doesnt NEED the tube!!  I am getting him off the tube ASAP. I am not using it anymore, and once I prove to them, that I am able to get Dylan his nutrition that he needs and he is gaining weight without using the tube... I'm taking it out!


Now.... Heart wise.... We had a Cardiology appointment yesterday and I told her that now that Dylan is crawling and trying to walk, I notice that hes getting out of breath and sweating while playing and crawling around.... She is not happy about that, and she thinks that based on the fact that he is so pink, and that his SATs are in the higher range for a Hypoplast, that he probably has some collaterals that need to be coiled. For those of you who don't know what Collaterals are.... sometimes when the heart tries to repair itself, it grows extra vessels. Sometimes these extra vessels can be benefitial and sometimes they can cause more harm. So we are upping one of his medications, and if the increase helps the symptoms, then she will see us in 2 months.... if it doesn't, then she will see us sooner for a Heart Cath to go in and see if he has Collaterals and to coil them off if he does.


There ya have it.... the whats been going on just in this week.  It's been a really rough, tiring, stressful, and even sad week for me. I'm so sad that my baby boy has to go through all of this.... as if he his heart troubles weren't enough, he has to deal with his stomach also. BUT, Dylan is the strongest little boy I know, and he is a HAPPY amazing little man. I love him so much and I will NEVER stop fighting for him, even though sometimes I feel like I'm failing him. I'm trying my best, and I'm taking care of him the best way I know how to, and that is all that I can do. I love him with all of my heart, and I tell him and show him that everyday. He has made me who I am today, and I love him for that.

Thank you for letting me vent. I think this might possibly be the longest post I've written on his blog.  I'll leave you with a few pictures.... but not it's time to get back to making his nutrition menu. <3