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

The Glenn Surgery Date

Yesterday was a very long day at the hospital.  I got there at 9:30am and wasn't finished until a little after 3pm. Yesterday was Dylan's sedated echo that his Cardiologist ordered for him at his last Cardiology appointment. Poppo went with us this time :-)   We were also scheduled to see Dr. El Said after Dylan's echo to go over his echo and to go over the results from his 24 hour Holter monitor that he did last week.  We arrived at the hospital at 9:30 for a 9:45 check in time for a 10:30 appointment ......... why we have to check in so early beats me, but whatever.  They called us back shortly after 10:30 and we did his weight and height check before we went back to his Echo.  Dylan weighs 5.392 kilo's ...... which is about 11lbs 8oz  and he's 23in long <3
Once we got back to the Echo room, it was the whole paperwork, explanation, yada yada yada.... While we were doing his weight check and paperwork and all that, Dylan's Sat monitor kept going off because his sats were dropping below 75, so when we were filling out the paperwork, the lady told me that she wanted the nurse to come examine him first because with his Sats dropping, they might not want to put him under sedation.  By the time the nurse came to check him out, Dylan had started to fall asleep.... and when he's sleeping, his Sats go back up to the 80's, and his heart rate slows down, so the nurse said she was ok with putting him under sedation with the Sats being in the 80's.  Dylan was already falling asleep, so the nurse said since he's falling asleep, she just might give him half of the sedation dose and let him sleep........ I told her that would be a mistake :-)  I said " He might be falling asleep right now.... but the minute you try putting that blood pressure cuff on his arm, he's gonna wake up, and he's not gonna wake up happy..... and the sedation meds don't last long on him.... with the full dose, he still woke up before the echo and EKG were done last time" .......... so..... she gave him the full dose... and I was right... he was out of it, but as soon as she grabbed his arm to put the cuff on him, he tried to pull it back.... he wouldn't open his eyes, but he was trying to fight it, and he started to wake up right as they were finishing his Echo.

Dylan passed out after the meds kicked in <3

After his Echo, we had to wait for about 45 minutes until it was time to see Dr. El Said, so my dad and I just walked around the Hospital to keep peanut calm.... we started to head towards the NICU just for old times sake, but I checked my facebook notifications on the way, and I saw that our friend Lisa was in Radiology with Evan, which was one of Dylan's NICU neighbors, so we turned around and headed to Radiology to visit with them for a bit.   We walked around a little bit more until Peanut fell back asleep, and then we went to wait for our appointment.

We got called back to see Dr. El Said a little after 1pm.  The first thing she said when she walked in was " He looks bluer" .....  She had the results from his 24 hour Holter monitor that he did last week and she started to look at that, and said " Yep.... he's a little Tachycardic ..... His heart rate is a little to fast for my liking."  She asked how he was doing, so I told her about his Sats starting to be more in the high 70's now, and dropping into the low 70's at times.  I also told her how he has been sleeping a lot ........ as in sometimes he'll fall asleep at 3pm and not get up until 6am the next morning. I try to get him up, change his diaper and keep him up, but he'll cry and fuss until I let him go back to sleep.  So this was her plan:
1.)  Stop the medicine Periactin that he was on for his tummy because it can increase the heart rate and make him sleepy
2.) Stop the lasix ( not exactly sure why)
3.) Stop the Enalapril which was helps with is blood pressure because...
4.) We are starting him on Sildenafil which will help open the vessels in his lungs which will also hopefully help with his Sats .... and it also treats the blood pressure
5.)  Start Digoxin to help lower his heart rate.

AND we have a date for his next heart surgery ( the Glenn).  Dylan will be having his Glenn on September 1st.   I guess Dr. Lamberti had originally put him on the schedule for September 9th, but Dr. El Said keeps asking him to push Dylan up on the schedule because she doesn't really want him waiting that long to have the Glenn.  She told me that we will try this combo of new meds to see if that helps with everything, and if it doesn't and Dylan's Sats continue to decrease before surgery, she said that he might require oxygen at home, or she will have to admit him, and they will have to do the surgery emergency based. We started the new meds last night, and we have to go back Thursday morning to see Dr El Said to see how the meds are working............. I really hope they start to work..... I don't know how long it takes for them to work, but so far I haven't seen a change.... his monitor was still going off a lot during the night for him being under 75, and when he was awake this morning, his Sats were still dropping to the low 70's with his heart rate still in the 160's and 170's .........  He woke up at 5:30 this morning and was asleep again by 7:30am ........ so we'll see as the day goes on and tomorrow if the meds are going to make a difference I guess.

I feel sick .... I can't eat much, and I just feel sad.  I know that Dylan is ready for his next surgery, but I'm not :-(   I'm not ready to hand my baby back to them, I'm not ready for them to stop his heart and cut him open. I'm not ready to see him hooked up to all those wires and to see him be intubated with all the chest tubes again.... I'm just not ready.  I'm not ready to not be able to hold my little guy for probably at least a week. I'm not ready to have to be away from home again, living in the hospital.  I can't wait until this is over and we're past this and we don't have a looming surgery over our heads for another couple of years. I can't wait until we're past this and Dylan starts crawling and walking, and he can play like a "normal" boy .... not having to be in the hospital and going to doctors appointments every.single.day  for awhile.....

I'm scared...... I read a lot of good success stories and it gives me hope......... but unfortunately in our Heart Community ..... for every success story... there are about 5 that are not so lucky.  I've read about little warriors that fly through their Glenn and are home within a week.......... but then I've read about ones that flew through their Norwood, which is supposed to be the hardest one to get through, and not make it past their Glenn...........  ANYTHING can happen... and that's what scares me the most..... I know he's a very strong boy, I know he's a fighter, but sometimes that doesn't matter...... sometimes life just isn't fair and things don't go the way you want them too or the way should.  I realize that it's true in the every day world, even for a baby or person who isn't sick ........anything can happen to anybody.... but it's just a little more scary in this Heart World.

Dylan will be 5 months old this Thursday. He's getting SO big.  He's smiling so much and talking up a storm. I love his little voice <3   I think we're gonna take him to get some professional pictures taken this weekend for his 5 months.  I hope the little bugger smiles for them ;)

 

As always, we are so thankful for everybody who keeps Dylan in their thoughts <3  Thank you!

Cardiology update

Today was Dylan's post-cath cardiology appointment.  We had to be there bright and early at 7am.  Dylan was not a happy camper this morning when I had to wake him up to get him ready.  He usually sleeps until 6:30, is up for about an hour and then hes back to sleep......... so he cried and whined when I had to wake him up at 5:30.
I wasn't expecting much from this appointment besides our usual X-ray, and the whole "hows he doin? He looks good"... " Ok, see you in two weeks" .....  Well our appointment was a little more eventful today.  His cardiologist thinks its time to put him on the schedule for his next surgery :-(   I'm ready to have it over... but I'm not ready for him to go back.  I'll never be ready.  From all of the post's I've read from other families, I was planning on him only being in the Hospital for about a week, so when his Cardiologist mentioned emailing Dylan's surgeon to get him on the list,  I said  " But this is a faster and easier recovery than his last one right? " .......... she looked at me like I was crazy.... and then told me to plan on being in the hospital for 2-4 weeks. :-(     She told me that a lot of babies have drainage issues, and they have to end up going back to the Cath lab to fix a few things..... she said that if Dylan surprises her and doesn't go through all of that then thats a good thing... but shes preparing me for the worst.... so plan on 2-4 weeks.  I REALLY don't wanna be back there for that long .... not being able to hold my baby boy and seeing him with all those tubes and wires again.... it breaks my heart :-(

They also sent Dylan home with a 24 hour Holter ECG..... witch is basically a continuous electrocardiogram.  She say's that its something they do before his next surgery.   She also ordered another sedated Echo either this week or next.

This week is a busy week for appointments.  We had Cardiology this morning... tomorrow is his new pediatrician, Wednesday is a Swallow Study..... Thursday he has OT....... and Friday is clear for right now.

I'll update more after his Swallow Study and let you know how he does :-)

and for those of you who don't know what the "Glenn" is.... here is a description of Dylan's next Heart Surgery.

• Stage two operation. Doctors perform the second operation, the bidirectional Glenn procedure or hemi-Fontan, when your child is four to six months old. In this procedure, they connect some of the veins carrying blood from the body to blood vessels carrying blood to the lungs.
  
  This surgery allows most of the blood to flow directly from the body into the lungs. Blood with more oxygen is pumped to the aorta to supply oxygen to the body's organs and tissues. This approach reduces the work of the lower-right heart chamber (right ventricle) by allowing it to pump blood only to the body.