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Sunday, June 3, 2012

Cath update #2...and fast forward 48hours

Alrighty...a total of 7 coils placed in both arterial and venous collateral vessels. We just talked to Dr. Patel. Pressures in the heart and lungs look really good. There is no narrowing of either pulmonary arteries. Aorta is of good, normal size. No enlargement of the heart muscle. No arrhythmia's. All in all, not too bad. They said those collaterals were pretty typical of child at Jonah's stage pre-Fontan. 2 were really twisty though and 1 of those will need to get clamped during the Fontan.

Jonah came out of sedation like a bear. He was so out of sorts and irritable for a good long while. As soon as we saw him he took it up a notch. Thankfully we were able to pick him up right away as long as we kept his leg straight. We were in recovery for really only an hour and then headed up to the 2nd floor for our overnight stay. Jonah continued to allow staff to touch him without loosing his marbles but it is very likely that general anesthesia helped in that department. He stayed pretty content in our laps for a long time but he was not able to get up and walk until 4:30 in the evening. Problem was, the kid would.not.sleep. Took about a 20min snooze but that was it. He did perk up after a little Tylenol; sat up, played, ate, laughed. We tucked him his crib about 9:00 and by 9:30 he fell asleep comfortably. Unfortunately, I could not relax enough to drift off so I was kind of up & down for a while. At about 11:30 I saw a red light swirling around (oxygen monitor taped to Jonah's finger) and realized he was intent on pulling his IV out. He still needed it for antibiotics so I got him up to rock with me and he did sleep there for the most part from 1:45 until 4:45am. I, still did not sleep, at all. Rob was able to catch some z's on and off, I just couldn't wind down. The plan was to have his discharge tests start earlier with the hopes of leaving earlier so when the tech came in to do his EKG at 5:45am we woke him up to do the test. But...nothing else happened after that. Ugh. So, we decided we would just try to sleep again with very specific "do not disturb" instructions for the staff. At 8:30am we were up and at 'em again. Now it was a chest xray. We had to go to main radiology to get this done and since it was a Saturday we had to go to the adult side of the hospital. Yuck. They strapped him in to what looked like a mini electric chair to accomplish this. The very minute we walked upstairs the ECHO tech was there. By now, Jonah had completely come undone. He was so hysterical from the chest xray we needed to stop the ECHO halfway through to give him a break. He was out of control. His fear of all things medical had officially gone to another level. He absolutely lost it. This is when Rob and I basically did too. We were beyond exhausted and seeing him go through this was absolutely gut-wrenching. We tried not to, but it was hard not to think of what his 3rd surgery/recovery was going to be like when he was dealing with something minor in comparison and he was having SUCH a difficult time:( After all was said and done, Jonah passed out in Rob's arms for about 2 hours or so. And we had plenty of time for napping because cardiology didn't come by until about 1:30pm to discharge us.

All of these tests were done to make sure that Jonah's heart and body was adjusting to not functioning with those collateral vessels. Over time, the heart function adapts and changes with these vessels but it is not necessarily in an efficient way. So clotting them off could be enough of a change to tweak things a little. Thankfully, all of Jonah's results were good. No areas of concern. Nothing new. Soooooo, after Dr. Ilbawi and surgical team reviews Jonah's cath on Wednesday, we will get a call from Dr. Ilbawi's nurse to schedule the Fontan. To lock it in. To commit and never look back. I can't even begin to describe our mixed bag of emotions on that one...

We are home and Jonah is not feeling great but not feeling horrible either. He for sure needs some time to reset but he is clearly happy just to be here. He had a big smile on his face when we walked in the door, immediately wanted to look for Sasha, and had a good 12 hours of sleep last night. Home IS where the heart is.

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