Tuesday, June 24, 2014

Heart Surgery UPDATED

For the few people who read my blog, I figured I better update you on how everything went with L's heart surgery.  The night before, my hubby and I decided to rent a hotel room (where they have a pool) and make a fun night of it.  L loved it.  He had a blast.  For months, we have been trying to schedule private swim lessons for L.  Through various scheduling conflicts, we only got three of the six private lessons we paid for in, so I called and got a refund.  I was a little worried I was doing that prematurely, but that night at the hotel, L shocked the heck out me and randomly started swimming on his own!  When he was really little, maybe 1 1/2-2 yrs old, he was swimming very short distances underwater on his own.  Then suddenly, as he got a little older, he became really scared of the water.  He would only get in with a floaty on his back.  I knew he had it in him to swim, but I was totally shocked when he all of a sudden just took off!  He liked that there was a big area of the pool 3ft deep, so he could touch, but also be a little braver.  It was very exciting...even more so on the eve of his surgery!

As much fun and as tired as we were, not a single one of us slept well that night and we had to be at the Cleveland Clinic at 7am.  We were all really nervous.  His surgery went very well.  It took around 3 hours.  I can't remember if I explained what A and I had decided to do, but L's surgeon told us he was the perfect candidate to try a "trial device" to close the hole.  Basically, it is the upgraded version of what they are currently using and it is not FDA approved yet.  Fifty people across the county are having this device put in and 12 of those 50 are at the Cleveland Clinic.  In a very huge coincedience, the doctor told us that that morning she had read an article regarding this device and that 5% of people had some "ballooning" of the device.  Go figure....of course, L's device ballooned.  It was actually a really good thing the doctor had just read the article, otherwise I am fairly certain there would have been a lot more concern.  All of the 5% of people that have experienced this, it has corrected itself.  L had to have a few extra tests because of this ballooning.

L was so amazing.  I am not kidding you.  He surprised the heck out of me.  At first, when he woke up from his anesthetics, he was a little freaked out and cried some.  He really wanted to go home or back to the hotel.  I had a little bit of a panic because he had to lay flat on his back and not move his right leg for 6 hours and 15 minutes after his surgery he was kicking and crying.  Once he was moved into his room, he cried a teeny bit, but was SO good and sat still the whole time.  My mom devised a plan to help him keep his leg flat.  She laid the tons of turtles he brought with him on his leg and told him they weren't allowed to fall off.  He thought that was kind of fun! He had lots of visitors, so that helped too.  Of course, we were there, my mom and dad, A's parents, a few of my cousins dropped by, along with my aunts and uncle and grandparents.  He loved having the attention of everyone....specifically all the cute, young nurses ;)

We all slept pretty decent in the hospital, or a lot better than I ever expected.  I think we were just SO beat, we had to just crash.  Sleeping in the hospital was a treat all of its own.  There was a very uncomfortable "sofa" area and that's about it.  I started off in L's bed and A on the sofa, but L's bed was one of those crazy beds that keeps blowing up every time and moving...totally weird.  It was dead set on kicking me off the bed and kept blowing up right under my stomach making me roll.  Meanwhile, A wasn't all that comfy on the sofa and wanted to move to the floor (yes, the HARD floor).  When the nurse came to check in on us, she offered A the sofa in the next "room" area (we were in a room with four beds).  After that, I think we slept alright.  A was up early uncomfortable, but I slept OK (L slept like a log!)  In the morning, we woke up to a bunch of tests that needed done before they would send us home.  L had his echo first, then an EKG, then a chest X-ray (where he, by the way, picked up TWO toys...this kid left with a TON of swag!)  When we were finished with X-rays, they immediately sent us BACK to echo because the doctors (ours wasn't in the hospital that day, she called us) wanted to make sure there wasn't a leak in the heart.  They looked and looked and still weren't positive there wasn't a small leak.  The ballooning had not gone down completely as well.  They did (all FIVE of them) assure us that with time, everything would repair itself.  They sent us home around noon with an extra follow up in a week (to check on the ballooning and leak) and one in a month!  L has been doing well ever since!

UPDATE:
It has been almost two weeks since L's surgery and everything is going well.  You would't even know he had heart surgery just two short weeks ago.  He is back to his normal off the walls wild self!  We did go back to the doctors a week from his surgery to have another chest X-ray and echo and the ballooning had gone down more, but wasn't completely gone.  However, the hole was completely closed with no issues of leaking anymore.  Yay!  We are hoping the ballooning is completely gone and the device will lay completely flat by the time we go see the doctor in another two weeks!

Here are a few pictures of the X-ray from L's week after surgery appointment.  If you look closely you can see the round device in this picture.  I was originally really shocked to see how big it is!  When the doctor showed us the device, it seemed small, but I think I was imagining in my body, not L's teeny little body.  I am so thankful to have this over with!

Here is an X-ray from the side....you can see the the coil of the device here really well.  I find this stuff SO fascinating!


Here is a link that shows the trial device we chose to put in L's heart.  Basically, it is an updated version of the current model.  This is cool article/ picture of it.

Monday, June 9, 2014

Getting Ready for Surgery

I am not going to say I am not nervous about L's surgery on Wednesday.  But, I am keeping busy by cleaning the house and preparing to be gone for two nights.  I know this is silly, but I keep feeling like I need to pack the whole house with me.  We decided it might be fun to go stay at a hotel in Cleveland the night before, we are going to go out to dinner and swim in the hotel pool.  Plus, the surgery is likely to be first thing in the morning and it's way easier to drive 15 minutes rather than an hour and a half to get there at 6am.  L will be staying one night in the hospital as well...from what I understand, we can stay with him all night too.  So now we are getting into two changes of clothes, toiletries, pillows (I canNOT sleep without my own pillow), blankies, stuffed animals, stuff to keep L occupied in the hospital, books and electronics to keep us occupied during the surgery (and all the chargers that go along with that), etc...  You get the picture.  It's crazy.  On top of that, we have to drop Ziva (dog) off at my in-laws and prepare my mom to take care of the cats and fish.  To make matters even more chaotic, I feel like I need to clean my house and wash all of our bedding and all of L's stuffed animals.  There's nothing worse than coming home to a messy house....and God forbid my little boy sleep with dirty stuffed animals after a surgery (I know...it's nuts and I know better but I am goofy and worry about infection...seriously...I am certifiable at this point! LOL!!)

I don't know if I have ever taken the time to explain the whole "bed situation" of L's.  It's intense.  He literally sleeps with tons of blankets...I can recall 10 not including sheets and comforter....and TONS of stuffed animals.  I've lost count of exactly how many of them are turtles, but there are a bunch.  When he was little, he used to make me put the blankets on him a certain way and he would name each blanket as I went (example: monkey blanket, train blanket, etc).  Thankfully, we broke him of that habit (not an easy feat!), but he still loves all the blankets (to the point that I had to hide them all so he couldn't find them) and washing his bedding is literally a full day, if not longer, chore!!!

I think maybe all this house cleaning/ worrying about packing may just be my way of dealing with my nervous energy.  My way of coping for now.  I can live with that.  It's definitely better than having some other bad habit!

It's weird....while I am definitely anxious about this whole ordeal, I think I'm actually a lot calmer than I would imagine (don't quote me on this come Wednesday!).  Maybe because I've been through so much myself and the whole process of surgery isn't a big unknown for me.  I really do trust this doctor.  I like her a lot and she seems like she is 100% capable and it's very important to her to do everything right.  As a parent, that's basically the most you could ask for, right?  Alright....well, I think I just heard the ding of the dryer.....time to fold some clothes (ahem....more dang blankets!!! LOL!)