Gaining Weight & Waiting for the Glenn

Happy boy stretching his legs and doing an Irish jig! 

Getting bundled after bath time.

Working out my muscles!

Cael's famous sad face. *Heartbreaker!

"Hey Guys! Look at how great I can hold up my head!" 

Tummy time 7.22.12

"NO MORE PICTURES, MOMMA!"

Happy boy waking up from a nap while snuggled with Mom.

Good Morning!

Wow how the last week has gone by- it is hard to believe we have not given an update since last Sunday! Sorry :/ But the major things have pretty much been the same as the week prior with a few adjustments.

The current main concerns for Cael are his need for oxygen support, his hypertension, and his heart’s function. Over the last week the main changes have been with his medications. For his oxygen requirement, it has gone up and down between 25% and 44%. We have not been able to notice a trend of when he requires more or less; when he requires more, sometimes he is happy, sometimes he is mad, and other times he is sleeping, so it is difficult for us and the doctors to know why he needs the extra oxygen. For Caelin’s heart, his Milrinone was increased to 1mcg/kg/min from 0.75. For his hypertension, they increased his Captopril, added Clonidine (and increased it throughout the week), and added Nitroprusside, an IV medication. Before his most recent dose, the Clonidine did not seem to do much for his pressures but this morning his heart rate dropped a little over an hour after the dose was given. It stayed in the 90s and low 100s for almost an hour. The doctors attribute this drop to the Clonidine so we will have to keep a close eye on it. The NiPride enables instant adjustments as his blood pressure needs it but it is not a long term treatment. Initially they started him on the NiPride to get an oral medication regimen in place that would consistently control his blood pressures; however, the plan now seems to keep him on the NiPride as long as his next surgery, the Glenn, happens within the next two weeks.

That brings us to the latest update on the Glenn. Because the doctors do not know why Caelin continues to desat, needs oxygen support, and his hypertension is so severe and persistent, they are talking about doing the Glenn sooner than later. Caelin is currently 4.7 kilograms and Dr. Chai would prefer for him to be at 5.0kg. Cael has been gaining good weight and should be close to 5kg next week, so the cardiologists want the surgery to happen soon- possibly next week. Dr. Stapleton, the catheterization doctor, would prefer to send Caelin to surgery without the routine pre-Glenn cath. His reasoning is because Caelin is so fragile and would prefer to avoid putting Cael through an extra procedure if it is not absolutely necessary. An echocardiogram gives them a general idea of his pulmonary arteries, shunt, and pulmonary pressures (this is what the pre-Glenn cath looks at) and the echo shows that these areas are stable. With that said, echocardiograms are limited and therefore, not always accurate. But the cardiologists have to discuss this with Dr. Chai, Cael’s surgeon, before making a final decision. Although Cael really does not need to go through an extra procedure, at the same time it could be risky for him to go to surgery with elevated pulmonary pressures or have some other surprise that may have been detected during a cath. Ultimately, the doctors need to balance the risks and benefits of each route and hopefully they will make the best decision for Caelin.

Cael had an echocardiogram yesterday that showed his function has gotten better, his tricuspid valve regurgitation is still mild to moderate, and his shunt looks wide open with good flow. We are so thankful for this news because on Saturday his saturations were worse, as was his agitation. So we were nervous and worried about his heart function. But thank God it was actually improved!

We are hoping since Caelin has gained weight, the nutritionist will increase his volume of feeds or his concentration to a higher goal. This should help ensure he continues to gain weight as necessary. He got put back on Colace for his constipation and gas pains and today we asked for his dose to be increased to his initial dose from a couple weeks ago because he is straining significantly when trying to stool.

So as of right now, we are closely monitoring his oxygen need, blood pressures, and heart rate. But more importantly, we are waiting to hear back from Dr. Chai on the status of when Cael’s Glenn will take place and whether or not he will go to cath lab prior to surgery.

On a side note, we are really looking forward to Uncle Tristan and Aunt Cassie coming down Thursday to visit us for three weeks! J