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