CT

Another visit to Oakland Children's. Another round of anesthesia. Another radiological study to check out this cute cute boy! This time we were going to have a CT of Blake's right arm, neck, and chest to check for problems that may be causing his right arm to swell. This is the scan that was SUPPOSED to be done on Saturday as inpatient...you remember the one he fasted for FOREVER! 

Mr. Blake sitting like a big boy...waiting for his CT.

Before each scan, a nurse and anesthesiologist check Blake over, making sure he's fit for the test. While we waited for all that to happen, Blake played entertained himself with the toys and equipment.

Finally, it was Blake's turn. I took him back into the CT room...and he clung to me as he whimpered. =[  The anesthesiologist was awesome...she let me hold him while she pushed the milkly propofol into his central line. As soon as he was out, she scooped him from my arms, laid him on the scanner, and I was ushered out. I've said it before, and I'll say it again, it is so weird to leave your helpless little person in the care of another. 

While Rustin and I waited...the radiology nurse manager came to talk to us about Saturday's drama and the delay of Blake's CT, etc. He apologized profusely and ensured he would look into that day's events to find out where the breakdown of communication first occurred. All I know is that THAT will never happen again to us! (still makes me so sad to think about!!)

Then Blake was done...and we got to see him in recovery.

It's so amazing to watch him lay there...so still and calm, then all of the sudden sit right up with his groggy eyes and little cry. I got to snuggle him first. The recovery room nurse gave him a little dump truck toy for being so brave.

With the CT out of the way...we were off to the heme clinic to see nurse D and doctor M.

We had timed the CT and clinic visit around Blake's next infusion so we could get pre and post factor levels. Under anesthesia for the CT, an IV was started (saving Blake a poke or two) and kept in so we could draw blood to get those levels!

Here's his cute dinosaur coban hiding his IV.


Next we changed his dressing and of course Blake got to watch a movie. Such a trooper!


Then we waited to hear the CT results from Dr. M.

The initial report of Blake's CT showed no blood clot. However, after talking with the radiologist, Dr. M got a new report stating Blake's right subclavian vein was occluded, AKA a subclavian vein thrombosis, or blood clot. Kinda, ironic that the boy who doesn't clot, now had a significant blood clot! (The subclavian vein is a major vein which drains blood from the upper extremities and returns it to the heart.)


The good blood flow that was initially seen was actually blood flow through a large collateral vessel, mistaken for the subclavian vein. (Collateral vessels form to bypass an area of poor or blocked circulation. These collateral vessels are visible on Blake's right shoulder and chest.) It is possible - and likely - this occlusion came about because of the restricted flow through the subclavian vein due to the presence of the PICC line. So, the swelling of Blake's right arm, about 1.5 cm circumference bigger than the left, is due to the altered and sluggish venous blood return to the heart through the collateral veins.

Okay...so of course our next question was, "What can we do about it?" And really there's not much that can be done. Surgery is not an option because of the proximity of the clot to the heart and lungs, plus Blake being so little brings up other concerns. Another option...heparin, or Lovenox, injections to keep Blake's blood thin preventing the clot from getting bigger and allowing his body to break down the clot on its own. But the blood thinning of a hemophiliac can be a challenge. So basically we were told, it's best to just wait and see how things go. UGH!

So, now we wait and hope and pray the swelling goes down and the clot dissipates.