Not The News We Were Hoping For

Linus's first 3 catheters were all done during his initial stay at the hospital so this was our first time having to bring him in for the procedure. We asked what the protocol was and how long they expected he'd have to stay in the CVICU. We were told that this procedure would only require an overnight stay and that he wouldn't go to CVICU, just the regular cardiac floor for 24hr observation. This is laughable because my son generally has every complication on the books and sometimes makes up new ones just to keep the medical staff on their toes. The plan was for Trina to stay with him in the hospital and for me to stay home with Simon & Dexter. I took 5 days off of work just to cover my bases.

Wed morning Trina took Linus in at 5am since he was first one the books. I was sad to be across town instead of with Linus, but someone had to do it. This was actually our choice. My mom offered to drive down so I could be at the hospital, but we decided we could handle it between the two of us. After all, we are capable parents and this would only take a few days, right?

They took Linus to the cath lab around 8:30 and called down occasionally to keep Trina updated. It took about an hour to put him under and to gain access. They tried using his right femoral artery again, but had to switch to his left. They were able to use his right carotid artery again with no issue. They took pressure measurements, ballooned his aortic valve and examined both sides of his heart and his valves. Once again he required a blood transfusion to bring up his H&H. The whole thing took about 4 hours beginning to end.

At the consult afterwards, DrHD seemed pleased with the results. He was able to balloon the aortic valve to 8mm, a full mm larger than the last ballooning session. This took the gradient from 42 to 18, the lowest it's ever been. He determined that part of the problem is that Linus's left ventricle is still never fully relaxing. This causes blood to back up into the right atrium which is, in turn, causing it to stretch and become enlarged. Unfortunately there isn't anything we can do about that. He did say that every drop of fluid he took in really affected him so he has to stay on fluid restriction, they were upping his Lasix dose and also adding a 2nd stronger diuretic. Yay, more meds... He said he hoped this combination would last 6 months before we had to do open heart surgery. I actually scoffed out loud when Trina related this to me. 6 months? Yeah right, the longest he's gone between procedures was 8 weeks and we stretched it to 11 with major intervention ie: hardcore meds and a feeding tube.

Linus was transferred to recovery where he should've only stayed for about an hour. Instead, he stayed for nearly 5 hours because he refused to wake up from anesthesia. They had to hit him with Narcan three times before he was awake enough to go to a regular room. They ran another CBC thinking he may need more blood. Luckily he was in the low normal range so his lifetime score stayed at a mere 11 transfusions. Over the next 2 days he had another CBC, had his potassium levels checked, an echo and a swallow study. So much for 24 hours, right? At least he avoided the CVICU and, all in all, everything was going pretty well. His heart rate and respirations were down and his oxygen sats were up. They told Trina that as long as the echo came back ok, they would send him home on Sat. Trina's been home only once and I've been to the hospital only once since Wed. I was so excited that we would all be able to spend a day and a half together before I had to go back to work. I miss my family.

Friday afternoon a cardiologist came in to talk to Trina. She said that Linus's echo did not look good. They found only a slight improvement from the echo taken before the catheter. According to the echo, the gradient was a 38 and the mitral valve had moderate leakage. She said they would be keeping Linus through the weekend and would be presenting his case to the team on Monday. It was her opinion that he would need open heart surgery sooner rather than later. We were crushed at this news. Once again we have one person telling us that everything is roses and another telling us the situation is grave. At this point I have no idea what to believe. I know there are always discrepancies between catheter measurements and echo measurements, but this seems extreme. Nothing to do now but wait til Monday when we can talk to the doctors and ask questions.

Blurry phone pic of Linus getting an echo.

Having a little sponge bath to wash off the funk.

Sometimes Mommy is even better than Food Bag. :)

Having the swallow study done. How cute is the tiny lead loin cloth keepin my future grandbabies safe from harm? :)

Snugglin with my boy.

My beautiful wife and child.