|Our baby boy is still fighting|
Over a week has gone by since Clay reherniated..and it has not been easy for any of us. Clay is still being kept paralyzed & sedated, so we have hardly seen him move a muscle. It's so hard to see my baby so sick again--and so so so scary. It's been a struggle at times to stay positive...seeing all the doctors so worried about him, hearing all their concerns & what-ifs...
But we are all still rooting for him. We are not giving up!
We met with Dr. Draus, our pediatric surgeon, and he feels like Clay is slowly getting to where he needs to be to have the second repair surgery.
...The plan is to get him off the milrinone (blood pressure/heart medicine)--which was stopped yesterday, and he is doing very well with so far! The docs tried to wean this medicine last week, but Clay let them know that he did not appreciate it. So we are so glad he's not noticing the milrinone's absence this time around!
...They have started him back on the sildenafil (to combat pulmonary hypertension), but he is getting the medicine through his IV, rather than orally. This causes concern because the sildenafil can make his blood pressure drop really low when given intravenously. So his dosage was started low, then slowly turned up over the past week. Today, he has been turned up to his full dose. His blood pressure has been lower than usual, but it's not been too low. Pray he continues to handle it well!
...The docs are hoping that Clay can be weaned on the nitric oxide (also combats PH), now that he is on his max sildenafil dose. Please pray we can get the NO weaned lower. It is currently set at 20 ppm, and the docs plan to wean it to 18ppm tomorrow if everything continues to go well overnight.
The docs & surgeons really want to wean on these meds so that they have more 'bullets in their gun' for after-surgery recovery...If he's maxed out on everything now, we won't have much to go up on afterwards. ECMO is still an option, a very very risky last resort option, but it's still an option. That scary machine has been in my mind more times than I would like this past week... I am praying so hard we don't have to go that route again..please please pray too!
The doctors & surgeons & nurses are all in agreement that we need to go slow any steady with any changes made, and not rush his repair surgery. As Dr. Draus said: if we do the surgery too early, when he's not ready, it could kill him.
Pray for our Clayton Cash--that he continues to stay strong & fight!...that he will let the doctors and surgeons know when he is ready for surgery...and that all of us: me & Eric, the doctors, surgeons & nurses--that we will all make the best decisions for Clay.
I miss my lil guy, that's for sure..his big bright eyes and that sweet, sweet smile. I can't wait to get him back. We got a long ways to go, but it will be that much sweeter when we get there. I am so proud of my baby--he is showing us (again) what a true champion he is.
Keep praying & believing!