Up His Sleeve

Ayden had some visitors this week, some with new tricks to teach and others with reminders. Among those visitors was Caroline. Caroline, now a junior in high school, was, once upon a time, one of my seventh graders and basketball cheerleaders. She and I often got mistaken for each other in the middle school hallway, a fact that I was reminded of after Bryan commented on how much we looked alike.

Ayden had yet to meet Caroline. Not only did she nanny this summer, but she also spent four weeks passionately working in orphanages in China. Caroline is very involved in the orphan ministry Show Hope and has been instrumental in beginning a partnership club, The Movement, at her school, as well as at other high schools across the nation.

Caroline would never have wanted me to post all of this about her on our blog, but I do so to show you her heart. She is one of the most caring, thoughtful, selfless people I have ever met. I'm afraid that my writing capabilities are far too deficient to express how beautiful Caroline is, but her humble actions say enough. While I was pregnant with Ayden, she gave Ayden some of her favorite childhood books and wrote him precious letters and notes to go with each. (One of his current favorite books, Friendly Fish, was one of those books that Caroline gave him.) I know those gifts were meant for my then unborn son, but every time she came into my classroom to deliver another sweet package, I was the one encouraged.

 

Ayden immediately adored Caroline. She taught him how much fun it is to be chased around the house. He would crawl a short distance, look to see if she was there, laugh hysterically, and then rush to crawl the next short distance. Of course, she lovingly played along with every step. Playing chase is now one of Ayden's favorite activities, and between hide & seek and chase, he's become quite rascally.

Thank you for blessing our family, Ms. Caroline!

Ayden and I were not only blessed by Caroline this past week. Bryan was out of town, and my parents came to help around the house and to love on Ayden and me. I was exhausted and overwhelmed, and they gave me strength. My daddy, Ayden's G-Daddy, spent many sweaty hours in the attic fixing our air conditioning. (Yes, during the hottest week all summer, we had no air conditioning!) My mama cleaned our bathrooms and cooked. They both spent time with their grandson.

G-Daddy greeted Ayden with their customary headbutt. Yes, I said "headbutt." It's pretty much something Ayden only does with his G-Daddy, and they have made it quite the ritual.

 

G-Daddy also continued Bryan's work with Ayden on stacking cups. G-Daddy was able to hand the cups to Ayden in the appropriate order, and he would stack them without help with balancing or straightening. Of course, with each activity, whether it be stacking cups or placing puzzle pieces, there was lots of clapping!

 

 

Grancee is among the people Ayden most recognizes. He reaches for her immediately, and he allows her to hold him perhaps more than anyone else. Their newest trick is called "the elevator." Ayden reaches up to Grancee, and she then picks him up. He sticks his booty out indicating that he wants to slide down her leg. And repeat. She got quite the workout! Sadly, I don't have a picture or video of their new fun!

Mister Helpful's Green Thumb

Mister Ayden has developed quite the desire to be helpful, and, as a result, he has learned a great many things. He holds the flush water while we set up his feeding pump or give him his meds, and then he hands the water to us when we are ready for it. He tries to buckle himself into his carseat and high chair. He likes to help close cabinets and doors. Ayden has learned to put his books away, though he most often enjoys dragging them all out on the floor. He hands me the wipe container when I am done changing his diaper. He tries to aid us in clothing him by putting his arms through his shirt or legs through his pants. And when he isn't sure how he can help us, he'll hand us imaginary objects, so we will say, "Thank you."

When we decided the indoor plants needed replacements, we thought it a good opportunity to get Ayden involved. Initially, he wasn't sure what to make of the soil, but he soon was willing to get his hands dirty... especially since he could transfer dirt from one pot to the next! How fun is that?!?!? When it came to actually putting seeds in the dirt, he wasn't terribly helpful; however, he certainly wanted his hands all over the plant! He would put the plant in the pot and then take it out again. He needed a little encouragement to keep the plant situated in the soil. Anyway, the gardening event made for some cute pictures. Enjoy Mister Helpful Ayden!

  

Errrrrrrrrrrr!

Here, Da!

 

 

 

 

It's That Time Again

Time for another cardiology visit, that is. Three months had passed since Ayden's last trip to see Dr. K, meaning he was due. So yesterday, I took the morning off work, we got Ayden up early, and off to see Dr. K we went.

As before, we had a scheduled diuretic wean one week before the visit. As before, beyond having an x-ray, getting height and weight, and checking extremity blood pressures and oxygen levels, we didn't know what would be involved in the visit. Last time, it was everything. For this visit, the list ended up being shorter. The only additional things were an ECHO (with a brief followup by Dr. K, herself) and a blood draw.

Once again, Ayden behaved incredibly well. He didn't complain a single bit during the ECHO. Given that he has pretty much mastered crawling, I was quite impressed that he was willing to lay on his back for half an hour while a technician did the test. Granted, Allison and I did our best to keep him occupied with light up toys and the like. Regardless, his level of cooperation was more than I could have ever expected. Instead of getting mad at the technician - which would be a completely reasonable way for a 16 month old to react - Ayden wanted the tech to join in on the fun he was having. Numerous times, Ayden handed one of his toys to the tech to play with. It actually got to the point that we had to stop him from doing it so the ECHO could progress.

The first go 'round with the ECHO, they got pictures of everything they wanted, save for one - a view of his right superior vena cava (SVC for short, and not to be confused with SVT).

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Let's pause here for a brief anatomy lesson. Humans have an SVC and an inferior vena cava (IVC). They return oxygen-depleted blood from the body back to the right side of the heart, which in turn sends that blood to the lungs to be oxygenated. The SVC returns blood from the top half of the body (roughly), while the IVC does the same for the bottom half (again, roughly). If you are a longtime follower of this blog, you will remember that the right side of the heart is the only side that Ayden has. Moreover, you will remember that his body is being rewired such that the right side does the absolutely necessary, can't live (literally) without it role of the heart's left side - i.e., pumping oxygen rich blood to the body. And if you're really on top of things, you'll recall that surgery #2, the bi-directional Glenn, disconnects the SVC from the heart and ties it directly into the lungs, via passive flow through the pulmonary arteries (the vessels that would normally be transporting blood from the heart to the lungs; there are two of them, one going to each lung, which explains the use of the term "bi-directional," or at least I think it does). So, right now, oxygen depleted blood from the top half of Ayden's body skips his heart and goes straight to his lungs. (NOTE: Surgery #3, the Fontan, does the same thing with the IVC.) Got all that? Great! Let's move on.

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You'll notice, before we had our little anatomy class, I said the technician didn't get a picture of Ayden's right SVC. I know what you're thinking - our lesson talked about an SVC, not SVCs. Why would I refer to a right one, if humans only have one? Well, Ayden is special. He actually has two SVCs. Technically, his second surgery was a bilateral, bi-directional Glenn. The Internet really let me down on providing good information or a useful link, but what little I did find on bilateral SVCs indicates it's found in about 0.5% of the population, or approximately 1 in 200. For persons with congenital heart defects, that rate rises to 5-10%.

Anywho, post-Glenn ECHOs are about many things, but they are especially about checking on the status of the Glenn repair. So, being able to see the Glenn connection for the SVC (or in Ayden's case, the SVCs), not to mention that everything is growing properly and blood is flowing adequately, is kind of important. And that is why Dr. K ended up conducting a mini followup ECHO herself. She wanted to see if she could spot that pesky right SVC. For this mini ECHO, Ayden got to sit up. Again, he was a trooper. And again, he wanted everyone to participate - he even tapped Dr. K on the shoulder with his toy in an attempt to get her attention.

In the end, she found the right SVC hiding behind a bone in Ayden's chest. As with all of the other pictures, she liked what she saw. His tricuspid valve is still leaking some, but she didn't seem too concerned about it. Like the ECHO, the x-rays (he didn't make a peep during them either, which was not the case last time) checked out fine. A week before the next appointment, we'll decrease his diuretic again.

 

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About that next appointment...

When we were done on Thursday, Dr. K shocked us by saying she would see us again in SIX months. She believed Ayden was doing so well that she didn't feel like a return in three months was needed. That was a great thing to hear. When we expressed our shock at not having to return until February, she said the only reason to come in before then would be to wean the diuretics more quickly. In other words, we'd either decrease his dose again in six months, or in three.

Despite how nice it would be to not have to go to the doctor again for six months, we decided to schedule a visit for November. We want to get rid of those diuretics sooner, not later. The sooner we can get rid of them, the sooner we can give Ayden some "encouragement" to start eating, without having to worry so much about him peeing his way to dehydration.

In case it's not clear, when I say "encouragement," I mean making him hungry.

In case it's not clear, when I say "making him hungry," I mean not feeding him for, oh, I don't know, 24 hours or so, in order for him to see the value of consuming food.

And this is something I actually want to do. I want to withhold food from my child for an extended period of time. They might as well go ahead and start engraving my name on the Parent of Year trophy right now. I've got it locked up.

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And finally, here's the plan (when it comes to Ayden, I cringe every time I use that term) for the Fontan: a pre-Fontan cath next spring to check on things and the surgery following in the summer, the goal being to have him home from the hospital before flu season arrives next fall.