Bodie was up and down all day today but now seems to have stabilized pretty well, albeit on a lot of supplemental oxygen. He responded well to the transfusion and that did help his sats thankfully. At this point, they have exhausted most of their theories on why he is desatting so badly. They had initially thought it might be his good old pulmonary hypertension, but he didn't respond as well as expected to the nitric oxide they put him on, so they ruled that out. Then, they thought maybe it was an infection of some sort, but all of the labs that have come back so far have been negative (they are still waiting on the respiratory lab, but since he's not showing any symptoms of a cold or upper respiratory infection, they're not expecting anything on that one).
Their only other theory (at least that they've mentioned at this point) is that his shunt is narrowing at some point. They did an echo last night and his function was still great (his echos have always looked good as far as heart function is concerned), and although the shunt itself looks good on the echo, they did notice that his blood flow velocity was higher than expected through the shunt, which apparently can be a sign of it narrowing. The echo can only show so much; the only way to confirm this is with a cardiac catheterization. So, they have him scheduled for a cardiac catheterization tomorrow morning at 7:30am. If you're not familiar with the procedure, they'll insert a catheter into a vein in his groin and lead it up into the heart and then inject a dye into the heart and lung area so that can map everything out and get a true look at blood flow and pressures in the heart and pulmonary arteries. Bodie will be knocked out for the procedure. Although it is nowhere near the scope of open heart surgery, it is still an invasive procedure that's not without risk. So, we're not thrilled at the prospect of it. However, Bodie has been battling desatting issues for so long and no one could ever come up with an adequate explanation, so it's kind of a relief that they're doing a cath and we'll (hopefully) get some answers finally. Caths generally do provide a lot of answers.
Bodie has been a real trooper through all of this. Even though he hasn't eaten in over 24 hours now, he was still content to just sleep in my arms all day and give me lots of smiles (which, yes, makes me realize that yes, maybe the kid actually can go more than 10 minutes without eating!). He's still hanging in there, thankfully.
So, we definitely have specific prayer requests tonight:
1. Pray that Bodie continues to remain stable tonight and gets his sats up high enough that they can start weaning his oxygen down.
2. Pray that there are no complications during the cath tomorrow.
3. Pray that they find a cause for his desats during the cath.
4. Pray that what they find can be fixed right there in the cath lab (if there is a narrowing of the shunt, depending on where it is, they may be able to put in a balloon or a stint right there in the cath lab; otherwise we may be looking at surgery again - really trying hard not to think about that possibility at the moment).
5. Pray that Dusk, Sierra and I maintain our sanity amidst all of this unknown. Mostly pray that we just remember to be looking toward God and reliant on His hand and His plan for all of this.
Thank you prayer warriors!