Good news, bad news

Sorry I didn't update earlier, but its been a long few days.  We're safely back home now, and Atticus is very glad!  He's doing ok, and he's still really tired and puffy from all the procedures and medicines.

Just so that I don't get ahead of myself, I'll take a minute to go back to after his Cath, and relate the last few days that way, because we had a busy few days.  First, we got GREAT news....Atticus IS a candidate for the Fontan!!!  Thank you all for keeping us in your prayers!!  God is so good!  We also got more great news, as the doctors also told us that they didn't have to do any corrective procedures while they were in the Cath Lab!  All of his blood vessels are wide open; even in his bad leg, and even where they had to place the stint in his aorta.  Hooray!  The pressures in his heart and lungs were perfect, and they think he's a great candidate.  However, they did notice that his Tricuspid Valve is still very leaky.  It's not so bad that anything needs to be done immediately, but Dr Bradley will have to attempt a repair during his Fontan.  He'll have to put a band around the valve to draw the "flaps" closer together, then soucher some of them together so that they actually open and close like they should.  Hopefully, this will be enough to repair the valve, and nothing else will have to be done.  (It also confirmed my hopes that Dr Bradley would be performing Atticus' Fontan, since Dr Hsia moved to London after Atticus' Glenn.)  He only weighed a little over 27 lbs, so they decided to wait another 3-6 months, and to let him gain about 5 more pounds.  We're going to follow up with his cardiologist, Dr Williams, sometime within the next 2 months (I still have to make the appointment), and he'll ultimately be the one who decides when to make the call for surgery.  Ideally, I'd like to aim for sometime either in mid to late May or after the summer is over.  They said that they're really busy in the summer, so the chance of being bumped from a scheduled surgery is greater.  That's something I'd really like to avoid!

That was on Wednesday.  Atticus was really groggy the rest of the day, and had a pretty rough night too.  Once again, we had to stop his overnight feeds at midnight, because he was having a circumcision and MRI the next morning.  I spent the night in the room with him, and the poor guy was tossing and turning all night.  He would wake up and get angry whenever the nurse had to come check his vitals every 2 hours.  He would cough and wake himself up because his throat was sore from being on a ventilator again.  He was so pitiful.  :(  Then, he woke up around 5:45am, and just wanted to be held.  The nurse came in around 6am to say that they were getting ready to get him for his surgery, and then they would take him to his MRI.  I walked with him down to the pre-op area, and just rocked him until he was given his sedative, and fell asleep.

I went back up to his room on 8D, and stretched back out on the couch to close my eyes for a little longer, since I hadn't gotten but about 6 hrs of sleep in the previous 3 days.  But it was short lived, because the study coordinator came to get me to sign all the paperwork necessary for the MRI.  Haha...seems like its always the way it happens.  She was really sweet and we ended up chatting for over an hour after she had brought me back to Atticus' room.  She finally excused herself, and I headed for the couch once again...after all, it was still pretty early in the morning.  I snoozed for about 45 minutes when we got a little more bad news.  The doctor who was conducting the study (Dr H) came in to talk about Atticus' MRI.  Everything for his heart looked fine, but while they were taking pictures of his heart, he noticed what he though looked like a cyst on Atticus' spine.  He said that it could be nothing, that he was a cardiologist not a neurologist, but they were keeping Atticus in the MRI machine a little longer to get some more detailed pictures of his spine.  After all, better safe than sorry.  He wasn't sure how long it would take him to get a neurologist to come take a look at the pictures, but it didn't seem like anything life threatening, so we would still be able to be discharged that day, once Atticus recovered from his anesthesia.  I thanked the doctor, and they said they would give me a call once he was in the recovery area.

I received a call not too long thereafter saying that Atticus was all done, and that I could come join him in the recovery area.  He was starting to wake up, and I had gotten there with his favorite toy just in time.  He immediately calmed down once I picked him up and the nurse grabbed me a rocking chair.  I sat and rocked him until it was time to go back to his room, where we would be discharged from later on.  Several hours later, we were finally on the road home, with a few more hours to drive to actually arrive there.  It was so nice to be home and snuggled with my hubbie in my own bed!

This morning, I got the phone call from Dr H.  They had confirmed that Atticus did indeed have a cyst on his spine.  It's not life threatening, or anything we really need to worry about too much at this point in time.  He also said that generally they see these kinds of cysts in adults who have some sort of chronic pain.  He doesn't think it will even necessarily give Atticus any problems until he's possibly an adult.  He's going to be sending an email and the MRI results to Dr Kinsman, Atticus' neurologist there at MUSC, since he had wanted to see Atticus again before his Fontan anyway.  We'll follow up with him at some point, and Dr Kinsman can give us a better idea of what exactly this all means for Atticus.

Please continue to keep us in your prayers as we face these new challenges with Atticus.  Pray that we can continue to make the best decisions regarding his care, that we can stay healthy until he has his Fontan, and that we have the strength to let God worry about it all for us.  We continue to trust in His plan for us, our family, and especially our sweet Atticus.  Please also keep him in your prayers as he recovers from all these procedure from the past few days.  Thanks for continuing to think of us, and checking back in with us from time to time!  :)

A big day....

Hello everyone!  I hope you all had a very Happy New Year!  We certainly did!  But now it's already Jan 11th, and as I mentioned earlier....that makes for a big day for Atticus.  As I type this, I'm sitting here in one of the many waiting rooms in MUSC while Atticus is having his Pre-Fontan Cath done.  We checked in at 7:15AM this morning, and he finally went back to the Cath Lab around 10:30AM.  Assuming all goes well, and that it remains a purely diagnostic Cath (aka they don't have to actually do any corrective procedures), he should be back there for about 3-4 hours.  I'll update here again once he's done with the Cath, and we've had a chance to speak with the Cardiologist/surgeons about the results.

Please keep us in your prayers today.  There are so many thoughts running through my brain right now, I feel like a duck on the water.  I may look calm on the surface, but under the water, I'm kicking and fighting to keep myself from sinking into "what ifs?".  Please pray for good news (that he IS eligible for the Fontan procedure), for the skills of those working on him, for strength for us and for Atticus, and for wisdom for Robbie and I to make the right decisions.  We continue to trust that God has a plan for us and for Atticus, no matter what path that might be down.  Thank you all in advance for your prayers, well wishes, and thoughts.  I'll update soon!