Sunday, October 16, 2011

Cath Master!

So Sam had his heart cath on Friday.  It went far better than expected! 

We stayed the night in Atlanta at the Georgia Power House (like Ronald McDonald House).  We had left Sam in Macon with Chris's parents, and surprisingly, Sam wasn't too sad about leaving them all behind for a car ride with Mommy and Daddy to go visit "Sam's hospital."  We got up early and checked in at Egleston.  Sam was pretty happy and wasn't too suspicious.  The cath lab set us up with a room, got Sam a hospital gown (and a stuffed animal to keep).  We had to wait a bit as there was one case before Sam's.  When the nurse came with the Verced to make Sam sleepy, things started getting rough.  He wouldn't take the medicine, and it had to basically be forced down his throat by the nurses.  He was upset about it, and was crying, and then started gagging.  Now, I just KNEW he wouldn't throw up, since he hadn't eaten anything since late late the night before (surgical precautions, and all).  But suddenly he vomited a whole kidney bean shaped basin of chunky food....from LUNCH the day before!!  OBVIOUSLY our GI issues did not end with that last barium study, and I have a feeling our GI will be doing a scope after hearing about this. 

After the Verced kicked in, Sam was reasonably content, though he didn't want to see those nurses again! When it came time to take Sam back to the cath lab, he did NOT want to go with the nurse.  They graciously allowed Chris to carry him to the lab table.  Sam was silly happy by then, and happily allowed the anesthesiologist to place the gas mask on his face.  Chris said he went to sleep while having a tickle fight with one of the nurses...adorable.  Chris and I went down to the cafeteria and had breakfast and a coffee.  We were touring the hospital and reminiscing about our stay during Sam's surgery.  Suddenly, we got a cell phone call saying Sam was all done and the doctor was ready to talk to us!!  Good or bad?!?!

We quickly ran upstairs and met the doctor.  He said everything looked much MUCH more stable upon cath exploration than can be seen during an echo.  While he did have some narrowing of his pulmonary artery, it actually was more of a 'kink' in the artery, and the pressure on either side was perfect and equal.  And as far as the collateral arteries go, there was only one that would have required coiling (though he has many others that aren't necessarily a danger).  That particular one, however, was super small, and he said it wasn't worth the effort.  He expects it to grow slow, and not cause us any problems in the near future.  Since we didn't have to do either an artery ballooning or a collateral artery coiling, we would get to go home as soon as Sam recovered from the anesthesia! 

The best news all day was that the doctor feels that with as stable as Sam seems to be, we can continue to hold off on his next open heart surgery!  He felt we could probably last as long as 2-3 more years (to age 4-5).  Sounds great to us!!

Sam returned to our room, not too happy but not as bad as recover from his ear tubes.  He didn't want the nurses around, so when they needed to do an Echo, he wasn't thrilled about being touched by the Echo tech.  He eventually settled down by being put in his hospital bed and having Mommy laid up in the bed next to him watching Yo Gabba Gabba videos on Mommy's phone.  Within an hour or so, we were being discharged!

We came home and relaxed with Chris's parents.  The next day I had to remove his bandages (they went in for the cath in his neck and groin).  They used big strips of tegaderm, and Sam fought like hell as clearly having the bandaged removed hurt.  We'll have to request a 'Bandage Change' bead for that one...Ya Ya will need to get one too, as she had to hold Sam down while I worked on the bandage.  I'm pretty sure she's got some bruises!  Speaking of beads, Sam earned 3 more "Beads of Courage" IV bead, a Cath bead, and an Echo bead (which is the coolest one, because it glows in the dark). 

To cap the weekend off, we went to the Georgia State Fair.  We didn't stay long...just long enough to see the cows, pigs, horses, and the wild animal petting zoo complete with giraffe and zebra.  Sam got to ride a pony, which was the highlight of his weekend I think! 

We couldn't be happier with the results of the Cath.  It was completely unexpected to not have to go through some interventions and have to stay the night...and we feel so blessed.  Sam has really been nothing but a miracle when it comes to all of his major heart events.  Looking at it all in hindsight, it seems so guided and planned. I just get the overwhelming sense that this is all meant to be.  Sam is meant to be.  Just the way he is.  And he is meant to be here.  And he will be here for a long time.

Wednesday, October 12, 2011

Beads of Courage

Sam has officially gotten his Beads of Courage bead collection started.  If you haven't heard of this organization, please check out their web site.  If your child or someone you know might qualify, check the list to see if their hospital participates.  To date, Sam has 129 beads, each representing a cardiac treatment, doctor visit, or event.  He will earn several more this Friday, when we go to Atlanta for his second heart cath.  We have started his journal, which will help him remember what each bead represents so he can know just how much he has been through.  This is what we wrote on the first page of his journal.

When I first heard about the Beads of Courage program, I thought it was a truly genius idea. Complex medical conditions that affect a child and require lots of treatment are difficult enough for adults to understand. How can anyone expect a child to fully comprehend such a condition, its consequences for their own life, and its consequences for their family? Often times our instinct is to forget our ‘bad’ experiences in life. But you can’t just forget what you have to live with everyday. These conditions just become part of your existence and your personality, whether you want them to or not. How should a family turn the ‘bad’ of that type of condition into ‘good’, and help their child accept and embrace what simply cannot be changed?

That’s the real genius behind Beads. Giving a child a bead that signifies each event of treatment can turn an event that is unexplainable, painful, or scary into something that can be counted, and showed off as unique and special. It can provide a physical history of treatment, but in a language more appealing to children.

When Beads of Courage came to Children’s Healthcare of Atlanta, you had already been through two years of treatment. I sat down with the Bead tally sheet and our baby journal for you, and started to tally up your treatment history. I was saddened and joyful at the same time to discover you had earned 129 beads in your first 2 years of life! I was sad because it reminded me of all the things you had been through as a baby, and how unfair it is that any baby should suffer. But it made me joyful to think of what you have overcome, and reminded me that if you have survived these trials, surly you were meant for great things.

Tonight, I am starting your journal for your beads. I want you to be able to not only know you survived a particular treatment, but the story behind each one. Each bead and story should serve as a testament to your own strength, the love and support that surrounds you from your family and friends, and the blessing of top notch medical care that has brought you this far. I can’t wait for the day that you can physically help me write the story of each bead in this journal, and then one day take over writing this journal yourself.

I hope that these beads bring you a sense of accomplishment. I hope that you look at them and feel pride and strength over what you have experienced. I hope you take the beads with you to show-and-tell, write an essay about them in English class, carry them with you to college, display them in your first apartment, share the stories about them from your journal with your wife, and count each one with your children.

Don’t look at these beads and feel sad or cheated. Yes, these beads also symbolize a condition that may have severe consequences for your life span. Yes, these beads may represent pain and suffering. But you must remember that nothing is promised to us in this life. We were never told we would not suffer. We were never promised perfect health and happiness IN THIS LIFE. A person who is born perfectly whole and healthy could find themselves in a more dire situation than yours in a moments time.

Everyone carries a unique cross through life. These beads define yours. Always remember that this cross was chosen for you, and just for you. You have to make the most of your cross, turning the sad and unfortunate into something grand. Our cross is to have to watch our first born suffer, but raise him to overcome and strive for greatness anyway. I hope we succeed.