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

 

We're back

So yes, I do realize that it's been almost FOUR months since I've written in Dylan's blog. WoW!  I Suck. And I do apologize that my last post was a post the day before Dylan's last Heart surgery and then nothing after that. I guess that I don't always remember that there are a FEW people who follow this blog that I don't have on my facebook friends list. I'm a PRO at updating everybody about Dylan on my FB, but here?  Not so much, as you can tell.  I don't know where I've been the last four months. Usually I love to write, I love to blog, I love to share.  I don't know what happened. I think that once we got Dylan past his Glenn knowing that the doctors appointments would slow down and we wouldn't have any scheduled surgeries or procedures for a couple of years, I was just really excited to be able to try and live a somewhat "normal" life with him.

Dylan made it through his Glenn like a champ!  Of course we had a few setbacks, both of his lungs collapsed the night of his surgery and that was very scary. It took a good few days to see any improvement with his lungs.  We also had a GI setback .... even after me telling them that Dylan was severely allergic to milk and that he would bleed if they gave it to him, they decided to give it to him anyway... and what do you know?  the next day.... blood.  Idiots!   I wanna say we were in the hospital for about 8 days post glenn and then we were home free!!  Yay!!  Things have been great at home the last couple of months... only dealing with the normal baby stuff like teething and stuff.  We still go to PT and OT every week to work on Dylan's development and his feeds.  Developmentally they say he's a few months behind, he's making progress... but its slow progress... but that's Ok.  Feeding wise he's doing great with his baby food, its drinking his formula that we're having problems with.  We've been trying to work on getting him to drink out of a cup because he would not have ANYTHING to do with a bottle....  but within the last 3 weeks he started having really bad reflux and choking and gagging so he stopped eating... he didnt want to even eat his baby food :-(    We increased his reflux medication and that seems to have helped a little.  He's back to eating..... AND for some reason, a few days ago, he decided he wanted to take the BOTTLE!!  Just out of the blue, we gave it to him because he wasn't even drinking out of his cup, and he took the bottle.... he will only drink 15-20ml's at a time.... but hes excited to have the bottle and he even holds it sometimes.... so its progress!!!  Hopefully he'll continue to take more and more and we can get him off of his G-tube soon!!!

In my last post, I posted that dylan was just learning how to sit up..... well he's a champ now!  I can never get him to lay on his back anymore.... he always has to be UP ... he even stands... he LOVES to stand.... but his PT told me not to encourage that too much because we need him to crawl before he walks.... which his is NOWHERE near crawling :-(   He just hates tummy time SO much... i don't know if its just him being stubborn.... or if his G-tube bothers him. I think that it does. I think that he might have some sores or irritation on the inside of his tummy where his G-tube is because its very sensitive.... if I even just bump it a little he will cry.... and he will cry if i even open it up to connect his tube sometimes.  Poor little guy :-(

Last week we had a consultation with a Urologist to talk about getting Dylan circumcised .... he was cleared by his Cardiologist to have it done last month.  Well that was until we just found out from his Cardiologist that based on Dylan's last Heart Echo, it looks like he has some narrowing where they did his last surgery.  They need to take him back into the Cath Lab to try and balloon or place a shunt to keep it open. The only good thing about this, is that his Gastro docs will be able to do an Endoscopy at the same time while he's already out, and hopefully get some answers to some of his GI issues.   So that's where we are at right now ..... its back to the Cath Lab.... probably early to mid January, after the Holidays.  It SUCKS!  I am totally bummed.  I was enjoying not having any upcoming surgeries or procedures to stress about for a couple of years..... and now i'm a wreck!   Dylan will do fine, he's a fighter, and he always amazes me...... It's just hard sometimes, and it sucks that it never gets easier.

I'm really mad at myself that I didn't blog during and after Dylan's last surgery. I really wanted this blog to be something he could look back on and read about his journey.  But I guess there is nothing I can do about that now, except for to try and keep up with this blog from now on.  I think I'm not only going to use this blog to update people, but to also blog about ME and my feelings and MY journey as a Heart Mom. Being a Stay at home mommy and taking care of Dylan 24/7, I don't have a time or place to break down.... I have to be strong and just do what has to be done all day, every day.  I need a place to where I can let my guard down and not feel bad about it.  This will be that place.

I will leave you with a few recent pictures of our little peanut, and hopefully I'll make more time to visit and update this blog more often.  Thank you to the ones who have continued to support me and my family. It means the world to us, and we wouldn't be able to get through this without the help and support from others! <3

Feelings.... Updates... and Pictures

So much has happened since my last post. I've been meaning to sit down and write a post for the last week... but every time I try to sit down and write .... I just don't feel like it ... I just have so many emotions, so many thoughts, so many things going on in my head, that it's hard to express.  I'm normally not like that. I like to write. I'm not the best when it comes to grammar and punctuation and yadda yadda yadda ........ I know that I use this ( ........... )  much to often .......... but ...... when I'm writing, I'm thinking, and my fingers just type what my mind is saying ... as if I'm talking to somebody .... and that's how I talk ... I pause a lot ... hence the dots :-)   Anyway.... My point was...  Normally I don't have a problem expressing myself in writing , and I like to vent.... but lately I've been having a problem with it.  I sit down to write, and I just think .... why does it matter? who cares what I say?  What I feel?  Why do I feel the need to write it down?  It doesn't change anything.  And sometimes I feel that no matter what I write or how much I try to explain myself and my emotions.... I'll still never really be able to express EXACTLY how I'm feeling ........ Because I don't really even know how I'm feeling sometimes...  I can't count how many times I've gotten asked " How are you doing? Hanging in there?"  this week ........ and every time ...... I've had no response .... I kinda just shrug my shoulders and change the subject or just start talking about how DYLAN's doing ........ because honestly... how I'M doing... all depends on how Dylan's doing .  When Dylan has a good day .... I have a good day .... when he has bad days, which have been a lot lately .... then my days are bad also ....... it drains me.. both physically and emotionally.

So I'll start with everything that's happened medically ..... then get into the fun stuff  :-)

So we had a Cardiology appointment on the 18th ..... and the whole time that Dylan's Cardiologist was in the room examining him, Dylan's Sat monitor was going off ........ he was in the low to mid 70's the whole time .... I almost threw the monitor against the wall because I know that his Card doesn't want him in the 70's at all, let alone in the low 70's ........ and I was afraid that she was going to want to keep him again .....  but these were the options she gave me ....... she said " we can put him on oxygen at home and increase his meds" ..... or ... " we can have Dr. Patrusko (not sure how you spell his name) do Dylan's surgery " ..... " or... we can take him back into the Cath Lab and balloon his shunt to give him some more time so that Dr. Lamberti can do his surgery as planned" ........ Really??  those are our only options?  I don't like any of them!!  I opted for the Oxygen ...... ha! If I only knew what I was getting myself into ......  the Oxygen was delivered to the house the next day ....  The tech came and explained everything to us, and he had me try to put the nose canula on Dylan...... OMG ...... poor peanut freaked out!!  Actually... Poor Tech guy ....... he just sat there with his mouth open and said " ...... I've seen babies and kids get upset about the oxygen and protest it.... but that is the most violent reaction I've ever seen" .........  yeah... Peanut has a little bit of a temper and he doesn't have a problem letting you know when he doesn't like something........  So we figured that we'll just wait until Dylan is sound asleep and slip it on him while he's sleeping right? ......... yeah right!  He was sleeping .... like dead sleeping ... heart rate down to 115 ..... totally out of it ........ the minute the canula even touched his nose... instant freak out .... I had to basically hog tie him down and just get it in, tape it to his face and see how it was going to go from there.....  He wasn't having it ..... he cried for an hour straight... the whole time his Sats are int he 60's ... the oxygen wasn't helping at all because he was screaming so much,  and he wouldn't calm down... so I just took it off .........  I tried this the next day also ....... and came to the conclusion that Dylan doesn't do Oxygen ....... no if's, and's, or but's about it ........ we were gonna have to figure something else out ..... So we had another Cardiology appointment on Tuesday, and I told her what happened ...... But I also told her that the increase in medicine seems to be helping his Sats, but that they get low again about a few hours before he's due for his next dose...... so she said that the medicine is good for 4-6 hours..... so thats why they start to decline a few hours before his next dose..... so we changed it to 4 times a day... every 6 hours instead of every 8 ..... and for the most part, its helped ..... he still has points where he's in the low 70's.... but he's still maintaining enough to make it to his original surgery date with his Surgeon.  So that leaves us where we are today ........ getting ready for his Pre-Op appointments tomorrow.... and Surgery on Friday. Ugh!!! I'm so damn scared! :-(

On the Gastro front ..........  we had his appointment today to go back and check for blood ...... and YAY! No blood!!  So what does that mean?   Well they say that he has a pretty severe milk allergy .... so severe that he can't even have a formula that is made in a factory that makes milk based formulas....  he was on EleCare.... which is an Amino Acid based formula just like the Neocate that they switched him too ......... but the difference is that EleCare is made in a factory that also makes Milk formulas.... so I guess the cross contamination is there ........ Neocate is made in a factory that only makes Neocate so there is no risk of cross contamination.......  that's what they say anyway ..... me?  I'm not to convinced yet .... I know that they said there was no more blood .......... but that was from stools they that they had me collect that were a few days old ..... they say it doesn't matter, that it can sit for days before it's tested ......... but I just don't know ...... Trust me, i'm not LOOKING for anything to be wrong with Dylan .....  It would be great if it really is just an allergy .... but I just want to make sure that's what it is ....... I'm going to request that they check him for blood again while we're in the hospital before they send us home ....... that way, I know that they are checking his stool right away and its not a few days old ........ I don't know... maybe I'm being to cautious.... but I just want them to check fresh poop!  haha!  ewww, I know :-)



Ok.... so enough about all the medical stuff ......... on to the FUN stuff!   I wanted to make sure that we had some really good days with Peanut this last week ...Lately I've been feeling bad about not being able to show Dylan that there is more to life than just doctors appointments and hospitals ..... We don't get out of the house much because he sleep's a lot... and we always have doctors appointments and stuff ..... So this weekend we took him to Balboa Park and had my dad take some family pictures of us ... and they came out great!!  Peanut really enjoys being outside... he likes to people watch... and he really liked the fountain ..  Then on Sunday we spent the day with Joe's family BBQing and hanging out .... it was a really fun time ...... and Monday I took him to get some studio pictures done at JC Pennys ......... and Tuesday we had a really fun play date with his little friend Lyam ..... It was a great few days!! And of course I'll leave you with all the pictures :-)

Tomorrow is Dylan's Pre-Op appointments ........... totally not looking forward to that!  And then Friday is the day ..... I'll try to post about his appointments tomorrow, but in all reality .... it probably won't happen ... I know myself... I'll WANT to post ...... but I'm gonna be so tired tomorrow, and I'm just going to want to love on Peanut all night before Friday ........ So you probably won't hear from me until after Peanut's surgery .... but for those of you who are my friend on Facebook ......... I'll be posting updates on there about his appointments and his surgery <3

OHHHH!!!  How could I have forgotten??  Dylan sat up ... on his own!!  He's not doing it all the time... and most of the time he needs help .... but hes really trying, and hes able to do it on his own for awhile at times... it's so cute!  He's also trying to roll over now ..... After he kicks the Glenn's butt ......... he'll be home sitting and rolling over in no time!! <3

He's sitting!! <3

Love him so much! <3

 

Full of smiles ;-)

He love's his play mat that Nana bought him <3

Dylan likes bath time

And here are some of Dylan with his friend Lyam <3  They are 8 days apart

And the Family pictures my Poppo took for us <3

We love this one!  His cute little legs hanging over the edge <3

My two handsome men <3

 

Gastro Update

 Well it's been a very busy last week.  In my last post I talked about Dylan's Cardiology appointment and his new medicine regimen.  We were supposed to go back to his Cardiologist last Thursday to see how the meds were helping and how he was doing.  I didn't want to go to that appointment.... I just had a feeling she was going to want to keep him.......... and I was right.  She wasn't happy that Dylan's heart rate was still on the high end, and she wasn't happy about the fact that I told her nothing much had changed... so she decided to admit him for at least overnight so that she could get a stomach ultrasound and have GI come see him and run some blood tests and stuff...... so I agreed ....... well...... I didn't really have a choice, her words were " I am no longer happy or comfortable with not having him here... I need to admit him to get the tests done that I want done and to have the doctors that i want to see him, see him..... so... he's staying with me"  :-(    I knew it was coming... I was still sad, but I was prepared for it.  So Thursday afternoon we were admitted, it was only supposed to be overnight, but we ended up having to stay until Saturday afternoon.  While we were there, they ran numerous blood work, they had GI docs come see him, and they even had the Neurologists come see him..... they were concerned about him sleeping so much and being very irritable...... They did a head ultrasound, and did some metabolic lab work.  The ultrasound came back ok, and the only thing that was off on his blood work was that his lactic acid was a little bit elevated, but they concluded that his head is Ok........ they suggested doing an MRI of his brain at some point, but Dylan's Cardiologist quickly shot that down since it doesnt seem like there is anything wrong with his brain and it would mean he would have to be put under anesthesia.  While we were there we were finally able to get the stool samples that I've been trying to get for the last month.  Dylan's stools are so loose that they just soak into the diaper so I was having a hard time getting a sample, and the other problem was that it had to be at the lab an hour after it was collected.... so that just didn't happen.  While he was admitted we were able to get the samples they needed to run their tests and we had the GI appointment today to go over everything.

All of the tests for infection came back negative which is great.  The only tests that didn't come back yet, were the test for the H Pylori Bacteria, and also the Protein part of the Malabsorption test.  The doctor said she is pretty sure it's not Malabsorption because of the fact that Dylan is growing and gaining weight like he should. The test for blood in his stools came back positive while he was in the hospital..... and it just so happened that Dylan had a poopy diaper while we were in the office waiting for the doctor.... So i decided to wait to change him until the doctor came in so that she could see what his stools look like.   When she came in, I changed his diaper and she checked it for blood again and it came back " very positive".  She said the most common reason for infants to have blood in their stools is due to an allergy.  Apparently Dylan has a VERY sensitive stomach because he was already on one THE gentlest formulas because he did have visible blood in his stools on regular formula.  There is only one other formula that they could try which is called Neocate.  We've decided to try the Neocate for two weeks and then go back to the GI doctor to check for blood in his stools again.  IF this doesn't work and it's not an allergy then they will have to do further testing.   Dylan has his next heart surgery in two weeks, so the plan is to change his formula now for the next two weeks, test for the blood in two weeks.... let him have his surgery and recover from his surgery.... once he's home if he's still having the loose stools and the blood, then they will have to do a colonoscopy to check for other things.   I'm really hoping that it's just an allergy and that the formula change will help him.  He's been through so much already, he doesn't need to have another testing procedure done.

We also found out last night at our monthly heart group meeting that Dylan's surgery has been pushed back by a day.... so he will have his Glenn surgery on September 2nd, instead of the 1st.   Which I'm happy about because September 2nd is my Grandma's birthday..... She'll take good care of him <3

Our big boy weighed in today at 12lbs 8oz today.  He's getting SO big! <3