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

Happy New Year??

Our New Year hasn't started out exactly as I had hoped it would.  Dylan has had problems with his G-tube since practically day one of having it placed. Three weeks after Dylan had his G-tube placed, the balloon popped in the middle of the night and his tube fell out. At this point Dylan was still on Continuous feeds all night, and the pump doesn't realize that the tube is no longer in the body and still continues to pump the formula out. When I woke up in the morning to change his diaper and disconnect him from the pump, I felt his back and it was all wet,  I figured that he had peed through is diaper and thats why he was all wet, so I went to open up his jammies to change him into new ones and as I open the front of his jammies I see his tube just laying on his stomach with blood and formula everywhere. I went into freakout mode, and immediately woke Joe up and told him what happened. Joe jumped out of bed and grabbed our handy dandy discharge folder with all the info on what we are supposed to do if something like that happened. We are supposed to insert this catheter called a Red Robin into the hole (stoma) to keep it from closing up, and then rush him to the ER.  The problem was, that the tube had fallen out in the middle of the night and was sitting on his stomach for I dont know how long, meanwhile his stoma is already closing. We couldn't even get the Red Robin in, so we covered it up with sterile gauze and got him in the car and rushed him to the hospital..... of course it had to be at 8am during morning traffic and the freeway being backed up ALL the way to the hospital. We threw on our hazards and drove in the emergency/bike lane all the way up the freeway to the hospital, while enduring lots of honking and birds being so nicely flipped to us.  By the time that we got into the ER and they were ready to insert a new tube, the stoma had practically already closed most of the way.... They had to shove, and shove and shove the tube back into the hole. It was HORRIBLE. I cried right along with Dylan. I wanted to shove the doctor off of him and sock him in the face so many times for making my baby cry like that, but I knew that it had to be done, so there was nothing I could do but hold Dylan's hand and cry with him.  They sent us home, and the next day we were back in the ER because we could tell that something wasn't right. Turns out Dylan got an infection from the tube falling out and being inserted back in, and that landed us back in the Hospital for a few nights.  Ever since the first time Dylan's tube came out, it hasn't stopped. Dylan has had his tube for almost 8 months, and he has probably had about 10-12 replacement tubes. I am not sure why, but his balloons either pop or spring a leak.  We have had nothing but problems with them.  It looks like 2012 isn't going to be any different for us :-(   Last week Dylan's tube sprung a leak, so I had to use the replacement tube I had, which had only been sent to us by accident.... normally they will NOT send me a replacement tube because insurance won't cover it. So when Dylan's tube sprung ANOTHER leak yesterday morning that meant taking him to the ER to get a replacement.  Yesterday morning at 8am I was getting ready to feed him and give him his meds and I noticed his tube sticking further out of his stomach than normal.... and that's when I knew his balloon had either popped or was leaking, so I checked it and there was no water in it. I removed the tube and filled it back up with water to check for a leak and I did not see one, so I put it back in and filled it back up with water, gave him his meds and food and then three hours later when I went to go feed him again... the balloon had lost all its water again.  I didn't have a replacement tube, so I had to tape the tube to his stomach to keep it in so that the hole didn't close and get him up to the ER.   I HATE the ER. I always hate bringing Dylan there and waiting in the room with all the sick people.  Usually because of him being a Cardiac baby, they get us in pretty quickly, but the waiting room was PACKED! and since he had a tube in place keeping the stoma open, they didn't seem to concerned.  We waited there for over an hour before I got fed up and demanded that they take us to a different waiting room in the back away from all the sickies! ..... From now on, any time we have to go to the ER i'm going to tell them we need to go straight back to the waiting room in the back no matter how busy or slow they are..... we will not wait in the main room with everybody else where Dylan has more of a chance of getting sick. That is the last thing he needs. After about 2 hours of waiting we were finally called and taken back.  When they took Dylan's tube out to insert the new one, I noticed a lot of blood filling up in his stoma and leaking out onto his stomach..... the doctor would put gauze over it and soak it up, but then it would just fill back up with blood.  I have never seen him bleed like that.  I have changed MANY of his tubes and he has never bled like that, so I asked the doctor if that was normal..... her answer?  " Um, I think so " ..... Wait, what?? you THINK so??  what kind of answer is that??  It either is, or it isn't!  I had to just keep telling myself that shes just a general ER doctor who has no knowledge of G-tubes other than how to take them out and put them back in.  My mommy gut was telling me that it wasn't right. I was not comfortable with seeing that much blood, especially since Dylan has never bled like that before, So I called the On Call Gastroenterologist as soon as we got home to ask them.  They said that I was right. That it isn't "normal" for it to bleed after the stoma has already been healed, unless there was irritation or trauma to the site from either his balloon popping or something else.  Dylan's balloon didn't pop... it just had a leak and it deflated and wouldn't hold water.... so I told her that I didn't think that was it.  She asked me if the bleeding had stopped and I told her I thought it had, but I wasn't sure..... there was no more blood coming out of his stoma, but a new tube with a balloon was in place so I'm sure it was blocking a lot of the blood from coming out.  She told me that if it stopped bleeding, she was going to just chalk it up to bleeding from the skin being irritated, but that if it continues to bleed, I need to call them back and he needs to be seen. When I got him up this morning there was dried blood all around his tube.  I cleaned it up and said I was going to keep an eye on it, and later in the afternoon after waking him up from his nap, I checked his tube to find lots of blood around his tube... this time it wasn't dried so I knew it was fresh.... he is still bleeding, the balloon is blocking it all from spilling out, but some of the blood is still getting through the gaps.  I called GI back and told them and they gave me two options...... I could take him back to the ER to have him looked at (  You really think I'm going to take him back to be seen by a doctor that says she "THINKS" that the bleeding is normal???) ...... or I could wait until the morning and get him into the GI Clinic to be seen.  Since he doesn't have a fever, I choose to wait until tomorrow morning to get him seen by the GI docs.

Dylan waiting in the ER, trying to take his ID off his leg

So that is where we are at.  So far, this new year SUCKS! We are still waiting on a date for Dylan's Cath. I am hoping to hear from them tomorrow. We originally had it scheduled for January 18th, but GI had decided to scope him while he's already under for the Cath, so currently they are working together to try and coordinate a date where that can be done.  I'm not sure what effect the current bleeding from his tube will have on the plans for the Cath and Scope.

In other news, Dylan has now officially learned how to roll from his tummy onto his back, and I honestly think that they ONLY reason why he learned how to do that was to get out of Tummy time. He absolutely hates it. As soon as I place him on his tummy he rolls to his back. Most of the time I cant even get him on his tummy. As soon as I put him in my arms to put him on his tummy he's already trying to roll over in my arms before he hits the ground..... he knows whats comin... he's a smart cookie!   He LOVES to stand... when I sit him up from laying on his back, he tries to go right into a standing position instead of a sitting one, and the smile on his face once he's up is so precious!!  He is so proud of himself for standing like a big boy!!

2011 was the best and the worst year of my life. I had a very difficult pregnancy from the start with being very sick the first four months to finding out about Dylan's heart, to going into early labor at 24 weeks and them preparing us for what would happen if he had come at that time. We spent the first three months of Dylan's life in the NICU watching him fight for his life. I witnessed my son stop breathing and having his body go cold, and watching his body turn a horrible shade of purple that I never want to see again, while holding his hand, as I had to get up and stand back as I watched nurses run to his bedside and place a bag over his face to get him to breathe again. I've seen my sons heart beating through his open chest.  I've heard my son lose his voice from a paralyzed vocal cord.  I've seen his chest cut open and sewn closed three times. I've seen him fight for his LIFE.

But I've also seen my son be BORN. I've seen him pull through everything life has thrown at him. I've seen him kick and scream and give the doctors HELL. I've seen him smile, I've heard him laugh, I've seen him thrive. I've seen him give it all he's got and then some. I've seen the most amazing little boy develop and grow into the most Incredible 10 month old that I have ever known. He amazes me every day with his fight and his strength. He is my world and the BEST thing about 2011.

Mommy and Daddy love you baby boy. You keep fighting and we'll be there right by your side. Here is to 2012, and another year with the most amazing little boy I could ask for. <3