Wednesday, August 10, 2011

They finally came!

  I enrolled Mateo in a program a few months ago called Beads of Courage.  The purpose of this program is to support kids that are going through tough illnesses. It also gives them something tangible to show others the rough, and often, dangerous road they have travelled.  Basics of the program are this:  each procedure or "milestone" throughout each child's journey is represented by a certain bead.  There is something special about each bead, whether its the color, the shape or how it was even glows in the dark!  A bead is presented to the child after each milestone.  These milestones can be anything from an overnight stay in the hospital, a blood draw, tests or scans, admission to the hospital, clinic visits or even "bigger" procedures like caths or surgeries. 
  I came across this program a few months ago and fell in love with it.  Many of our heart kids go through some tremendous pain and difficult procedures.  But so often, we are told that our kids don't "look sick" or "look normal".  And that's a great thing.  I want Mateo to look normal and to act like he's never seen the inside of a hospital.  But at the same time, I want what he goes through to be important.  And these beads give it meaning, validation...something tangible to show people "look what he's accomplished".  These are beads that he can take to school and show his friends or teachers or ANYone to say that he fought, he survived and he continues to thrive.  To LIVE.  Each bead IS a bead of courage.  Because truly our children are brave and many have looked in the face of death and beat the odds.  And this strand of beads recognizes that. 
  So when that USPS box arrived on our doorstep, I was excited to open it.  Mateo was too.  He was dancing in place as I cut across the tape that held it shut.  Once I opened it, I just let him go to town pulling out one envelope of beads after another. 
  Tonight we strung them together as a family.  While Mateo does a lot of the hard work, we're all in this journey together.  We grouped them all together by color and shape and let Mateo do the majority of the stringing.  He seemed to really enjoy it and had so much fun choosing which bead to use next.

We got to the end of one strand of string and had TONS of beads left to string.  That's when it dawned on me how many beads there actually were.  How many things Mateo had gone through and endured.  These beads only represented the first 3 years of his life and I started wondering how many more we were going to have to add. 

He has surgery coming up at the end of this month and that always tallys up quite a few.  And then there's the rest of his life.  Cardio appointments, tests, etc etc.  It made me a little sad looking at it all, but I didn't want to take away from what they really stood for....Mateo's bravery and what he fought for.  And he was SO happy to be doing this!  Aside from being very concentrated when he was actually putting a bead on the string, his smile was from ear to ear almost the entire time.  And for me, they represent that he is still here and still fighting.  We hope and pray for the best when it comes to our future, but he is here now and we are enjoying every minute.

Friday, August 5, 2011

Heart Bears and Updates

  I had my OB appointment today.  Things went well, aside from the waiting that goes with these appointments.  The doctor listened to all my concerns and addressed anything that might need to be taken care of.  He listened to the baby's heartbeat.  He seemed to listen to it forever and really be listening for...something....but he said everything sounded great when he was done.  He is a very optimistic doctor and left me feeling good and hopeful about everything that is to come. 
  I am supposed to be going in for a Level II Ultrasound within the next couple weeks.  That's when we'll take a closer look at the baby's heart and determine whether or not everything looks like it should.  I'm having mixed emotions about this because its right before Mateo's surgery.  If everything is good and healthy, then of course I want to know right away!  BUT....if there are problems, I'm not sure I want to know about it right before Mateo's surgery, when I need to be focusing on him and that procedure.  I guess we'll just deal with it how we always step at a time.
  The doctor also said not to worry about the stress that is sure to come with Mateo's surgery, that the baby would be fine.  He really put my mind at ease about a lot of things, so I'm glad I went in to see him today.  I almost rescheduled the appointment this morning because I was not feeling very well and just wanted to stay home.
  When we got home, there was a package waiting for us at the door.  I ordered Mateo a Mended Heart Bear a week or so ago and it arrived today.
Its the cutest thing and SO soft.  It has a zipper on its chest (like Mateo's "zipper", which is what we call his scar from his last heart surgery).  When you unzip him there is a little, stitched up heart inside....just like Mateo's.

I plan to use this in a couple weeks to explain, in very simple and non-scary, terms what Mateo will be going through.  He already knows his heart has a "boo-boo" and needs to be we'll see how well we can prepare him for this.  Now, I just need someone to prepare ME!

Wednesday, August 3, 2011

Long Update, sorry y'all!

Well, I know its been forever since my last entry.  However, I'm confident that most of you understand why I haven't exactly felt like writing for the last 4 months!
  To explain, in April Mel went to Panama City for 6 weeks for "work stuff", leaving Mateo and me at home.  I decided I didn't want to spend 6 weeks by myself so I took Mateo up to Wisconsin with me for a month long vacation of good ol' family time. I was excited to be able to be 'home' again for a nice long stay.  I always enjoy going home.  Its one of the most comforting places I know happy place!
  Mateo had a grand time wrestling with his cousin Dawson, playing in huge mud puddles, celebrating his 3rd birthday, eating fresh cheese and just getting some fresh country air into his lungs!  He had animals galore to gawk at....kitties, chickens, a horse and dog...of course the dog was his favorite.  He would play fetch with Turbo for hours!  My dad was able to take Mateo on several tractor rides and he even got to help my mom in the garden a little least, as much as a 3 year old can help!
  Unfortunately, my time there wasn't as fun as Mateo's, although it did happen to be eventful.  I was sick for almost the entire month we were there.  I ended up with a head cold the first week, nausea the 2nd week and full on vomiting for the rest of the time we were there.  I spent my time glued to the couch with a bucket always within arms reach. 
  I realized after the 3rd day of not being able to keep anything in my stomach, that this was feeling all too familiar and I had my mom pick up a pregnancy test for me.  Sure enough, the result was positive.  Talk about a huge surprise!  The phone call I made to Mel that night say the least.  I ended up having to cancel my flight back to Florida because there was no way I could maneuver the airport and a 3 hour flight, with Mateo, by myself while throwing up every half hour.  Mel ended up driving up from Florida to come get us and take us home.  It was a very long 3 day trip in the car from Wisconsin to Florida.  But we made it.
  Once I got home, I found out I was only about 8 weeks along.  At my first OB appointment, the doctor had me admitted to the hospital right away.  I had already lost a considerable amount of weight and was severely dehydrated.  Oh the memories.  It was like deja'vue.  I had gone through all of this with Mateo.  I had been so worried about having to deal with this a second time that Mel and I almost decided we were happy being just a family of three.  But EVERYONE I talked to said that every pregnancy is different....I probably wouldn't be sick at all, or at least not AS sick......blah blah blah.  Well, I guess we took a leap of faith and it didn't pan out the way I was hoping!  So, anyway, now you know where I've been...glued to my couch and waste basket.  But, I am finally through the absolute worst of this crazy morning sickness.  I have a little more energy and the vomiting has almost all but gone away.  I'm still not feeling like myself though.  And maybe I never will.  Maybe I'll have to find a new version of 'myself' and be okay with it.  Time will tell.  Right now, I have more important things to think about.  Bigger issues looming in the not-so-very distant future.
  Within the next 1-4 weeks, I'll be seeing the OB again for a level II ultrasound.  I'm not sure how I feel about it.  Excited?  Nervous?  Scared?  All of the above I guess.  While I want to know whether I'm having a boy or girl.....I am scared to find out about this baby's heart.  We've been told it would be like getting struck by lightening twice to have a second child with HLHS.  BUT....that doesn't exactly comfort me since we live in the lightening capital of the world....or at least the country.  I push a lot of the overwhelming parts of life to the back of my brain and let it sit there until I absolutely have to face I've just been focusing on feeling better.  One day at a time, right?
  Then there's all of Mateo's medical issues that we've had to deal with and face in the last few weeks.  On July 12th, Mateo had his pre-Fontan heart catheterization.  NOT fun stuff.  We have been hospital-free for 3 years, so this was a shock to him.  He did great during admitting.  Even did great with getting the IV placed, thanks to something called Ativan, a drug that makes him a little...."loopy"....and relaxed.  He also did great through the procedure itself.  Basically, they sedate him, intubate him and then place a catheter through the main artery in his leg to his heart/lungs and do some "information collecting".  Mateo did great.  But it was the recovery part that was a nightmare. 
  We had to stay in the recovery unit for 6 hours post-cath to make sure he clotted off correctly and didn't develop a hematoma or other complications.  Mateo screamed and cried the entire 6 hours.  I felt like they were traumatizing him and I KNOW he thought they were torturing him.  He had no idea what was going on.  His throat was raw from the tube that had been stuck down it during the procedure, his groin was bruised and in pain, his head was reeling from the was a total nightmare and he was in melt-down mode the entire time.  He did not stop crying until I picked him up to take him away from it all.  As soon as we got in the car, the tears stopped.  It is torture on a mother to see their child in that much pain and fear and not be able to do anything about it.  I was sick the whole time...just sick.  And angry.  And it placed a lot of fear in my heart for the upcoming surgery.  But again, that will be buried in the back of my brain until I have to face it.
Overall, the results from the cath were okay.  His pressures are a little on the high side.  But that could have been due to a couple of things.  First, the cardiologist had to coil off several large collaterals that had grown over the last few years.  Those collaterals may have been contributing to those higher pressures.  Second, Mateo has a narrow ASD that we've known about since his Glenn surgery.  It will need to be carved out and widened during his next surgery.  That "narrowness" causes things to back up a little bit and adds to the pressure in his lungs.  So, these are fixable issues.  However, they may still lead to a longer recovery period after the next surgery, causing some excess fluid that will need to be drained out post-surgery.
  A few days after the cath, we got to meet with the surgeon that will actually be performing Mateo's Fontan surgery.  This is the same surgeon that did Mateo's first two open heart surgeries.  He is an amazing man.  Dr. Quintessenza is a wonderful surgeon with one of the best bed-side manners I have ever seen in a doctor.  We hadn't seen him in three years...since Mateo's last surgery....but I immediately felt at-ease when he walked into the room.  He said that Mateo looks healthy and big and in perfect shape for the surgery.  He complimented us as parents and had nothing but good things to say.  He is extremely optimistic for the surgery and for Mateo's future.  These are all the reasons we are following him to a different hospital than where the first procedures took place.  I can change locations, but not surgeons.  I trust this man and feel confident that he will do his best.  At Mateo's last surgery, Dr. Q hugged me and told me not to worry.  That he was going to take care of Mateo and do the best that he possibly could.  It was very comforting, and I felt that comfort again just talking to him about the upcoming procedure.  God be with him!
  So Mateo's surgery is scheduled for August 31st.  We have to keep him fit and healthy until then and we're trying to stay positive.  Right now we are mentally sticking to facts, only facts: Mateo needs this surgery, its already scheduled, we've known this day was coming, etc.  The emotional aspect of this will hit my like a brick wall the week, day or hour that it all happens, but until then, its staying buried (except for those times when I can't sleep at 3am and I am wide awake with fear of unanswered questions, worries and "what-ifs"!).  So say a prayer for us.  We have a lot coming up and need as much help as possible.  Thanks for sticking with this blog.  This is a long entry since its been so long since the last one and so much has happened.  I'll try to stick with it for updates as best as I can.  Heart hugs to all!