My big boy is 3!!

Today is Atticus' birthday!! I've really been slack on here lately, and for that I apologize. I'll give a quick summary, and then return to the focus of this post, which is today!

Atticus was discharged from the hospital 5 days after surgery! That's right...5 DAYS!! He had a great recovery and was back to his normal self within a few weeks. Immediately after surgery, he was pretty weak and frail. It reminded of just how far we've come in the last few years. I also understand why the surgeons want him to be a little heavier before his Fontan. Atticus lost about 2.5 lbs during his stay. That doesn't seem like a lot, but when he started at about 28 lbs...that equals about 10% of his total body weight. He was so skinny. But we've managed to fatten him back up nicely. ;) Still working towards 30 lbs though.

He's continuing to make strides physically. He can run with his walker, and had gotten pretty good at walking without it. He's up to a sign language vocabulary of about 50 signs. He's even starting to string 2 signs together!

Atticus had a great day today. Its hard to believe he's already 3 years old!! We played all morning, went to the park after a nice long nap, and then came home for cake and presents. He started getting the hang of opening his presents, and then kept signing "more" for the next one. Lol!

Thank you all for continuing to keep up with us over these past three years. Your comments, prayers, calls, etc have meant so much. As always, keep on prayin'!

Post surgery update

Thank you to everyone who kept us in your thoughts and prayers yesterday. Atticus did great during his surgery. Dr Bradley managed to perform the Tricuspid Valve repair. The gradient in his aorta turned out to not be as bad as they thought, so he didn't have to do anything about it.

Atticus has been recovering like a champion! They were able to extubate him at 3AM this morning, and have begun to wean down some of his medicines. The function of the valve has looked great on his echocardiograms so far. Please continue to pray that the repair stays repaired, and that we won't have to worry about a mechanical valve.

They're keeping him pretty sedated for now. He'll wake up for a few mins, give us a weak smile, feel around for his Cookie Monster, and go back to sleep. The only problem he's having so far is that he is "eating through" platelets again. So please also continue to pray that he can keep these numbers up.

The game plan for today is to keep him comfortable, mostly sedated, and to try to wean him down to just Milrinone. We're so thankful for the team of doctors and nurses here that are working around the clock to take care of our little fighter! As always, keep on prayin'!!

A change of plans

Well, its been a busy few weeks, and a lot has happened, so I'll do my best to update.

Atticus' original surgery date was bumped back from July 11th to today, July 20th. They had a few emergency cases come in that week, so we got rescheduled. We came down yesterday to MUSC for Atticus' pre-op work up, only to receive more news that floored us.

There has been another change in plans for surgery for Atticus. He won't be having his Fontan procedure today as we originally planned. Instead, Dr Bradley has decided to attempt to repair Atticus' Tricuspid Valve as well as a narrowing in his aorta. He decided that these procedures needed to take precedent over the Fontan, which has now been delayed for at least a year.

We were stunned by the news yesterday. I thought this was going to be attempted at the same time as the Fontan (because that was the plan in January), and I'm not quite sure what exactly Dr Bradley saw in the pre-op work up that changed his mind, but I have to trust his judgement that trying to do both procedures at once would be too much on Atticus' heart. Its frustrating to get yourself prepared for something like this, only to thrown a major curveball. But Atticus has never been good at doing anything "normal" when it comes to open heart surgery, lol.

Although I'm disappointed that this means that we will still have another open heart surgery in the future, I have to trust that this too is all part of God's plan for Atticus. I know that He is always in control, even when I feel helpless. Please continue to keep us in your prayers today as Atticus is already in the OR, waiting for surgery to begin. Pray for Atticus, those involved in his care, for strength for Robbie and I as we deal with these changes, and wisdom to make the right decisions. I'll update later today as surgery progresses. Just Keep on Praying!!!!

One week....

So its down to just one week until Atticus' Fontan. Less than 7 days to go. We've had all our final visits from our therapists. We stopped Atticus' aspirin regiment a week ago. Only 3 days of work left for me. And Atticus has managed to catch a cough.

It seems like mostly sinuses/allergies. Plus with the recent heat wave, its made everything super dry. I took him to the doctor before the weekend, and she says his lungs sound good (for him). I also followed up with MUSC on Monday to get their opinion. They want me to follow up with the pediatrician again this Friday, just to be sure it still sounds the same, and that we still think its just sinus/allergy related, and then we'll decide if we're still on for July 11th.

I have so much to do, and its like watching sand run out if an hourglass. I feel like part of me wants to prep for a 2 week stay; part of me wants to prepare for another 6 month nightmare. Part of me wants to think I've gotten most things prepared, aside from some laundry and odds and ends; part of me is doing figures like an old accountant screaming, "Did you save enough for this?", "What about this expense?", while another part is an old, nagging mother going over a "to-do" list that looks like something out of a cartoon with NOTHING crossed off. Not to mention the part of me that wants to remain cool, calm and collected while the other part is an emotional madwoman.

To say this is all overwhelming is the understatement of the decade. I have known this day would come for over 3 years, but I'm still not ready. There are things I know I could have done to make myself feel better prepared. Then I try to remember I'm only human. But then, along comes this cough, and now I'm not even sure if we'll be able to have the Fontan on time. Its so frustrating.

And then I try to remember that God is continuing to work on my patience. That He has a plan for ALL things, and that its His timing, not mine. Please continue to keep us in your prayers, thoughts, and well wishes. Pray that Atticus will feel better soon, and that we'll be able to have his Fontan as scheduled. And feel free to throw one in for mine and Robbie's patience and peace of mind during this time. I'll try to update on Friday, one way or the other. Just remember, Keep on prayin'!

A long overdue update!

Hey everyone! I figured I was pretty overdue for an update on Atticus. He continues to get stronger every day, and is growing like a weed! He's about 3 feet tall, and hovering around 29-30 lbs. He's gotten really good at using his reverse walker. He can almost RUN when he uses it! He's able to maneuver it pretty well, and we've started letting him use it in public (versus using the stroller) since he can control it better and doesn't tire as easily. He's also even started to walk....totally unassisted!!! He's managed to take as many as 10 steps across the living room! Hooray!! He's also learned how to go up and down the stairs using the hand rail. He's doing so well, in fact, that his PT and I agree that she only needs to come once a month! (Yeah, there was a time when I NEVER thought that would happen!). He continues to amaze me!

Atticus is also getting better with his sign language. He's up to about 40 or so signs that he can do himself, and recognizes many more. He's even starting to string 2 signs together like "down please" or "Cookie Monster", etc. He's really bad about making up his own signs when he doesn't know the actual sign for a word. Lol! Learning sign language has also had the added bonus of helping with his OT because he's having to use his hands more.

Other than that, from a health standpoint, we're basically on a countdown until his Fontan in July. We had a check up with his cardiologist, Dr Williams, who said everything continues to look/sound good. We don't have to go back until after the Fontan. We also visited with Dr Brown, his pulmonologist, who said his lungs are sounding great. We've managed to wean him completely off Sildenafil! (Hooray for one less medicine!). We've also managed to completely wean Atticus off of his oxygen at night! He only really needs it occasionally, when he really over does it.

Thank you all for your continued prayers, support, and well wishes. God continues to make Atticus stronger all the time. He's making strides that I was never sure he would reach. As July draws nearer, I'll continue to ask everyone to keep us all in your prayers. I find my mind finding its way back to his impending surgery more and more often. There's just so much that makes my head spin, so much information to process, so many preparations to make, etc. I know that we're rapidly approaching the point where I'll no longer be able to keep this on the mental back burner, and I'll have to think about it in order to get ready to go down to Charleston. But the minute I start to think about his Fontan, the pain I'll be deciding to inflict upon him, the fact that he doesn't really understand what will be happening, what all this surgery mean for Atticus' chances of survival, etc it becomes so overwhelming that I just want to be sick to my stomach. I know that God has a plan for all things, and that He'll take care of all those things I worry about, but it doesn't mean I'm not afraid. I'm afraid that God may decide that these are my last days with Atticus. And the grief at the mere idea brings me to my knees. I don't like to think that way, but it also reminds me to treasure each moment I have right now with him. Even after almost 3 years of knowing that this day would eventually come, I just don't feel ready. Like I said, I'm in need of some extra prayers as well.

Anyone who knows me knows that I always try to find something positive in every situation, so I'll end this post with a little happier note. My mom took Atticus to the local park the other day to have some one-on-one time. They had a great time playing there (The park is brand new and made especially for disabled children.). While they were there, my mom said Atticus noticed a little blond haired girl around his age and signed "I love you" to her! Lol! What a little flirt! Thanks again for checking in on us, and as always, please...

Keep on prayin'!

Spine update

Hello everyone! I know its been a while since my last update, but I recently took a part time job to help with Atticus' upcoming surgery, and what little free time I had is now virtually nonexistent. Well, I finally managed to get in touch with Dr Kinsman for more information on the cyst on Atticus' spine. Or should I say, IN his spine. It seems that the cyst is actually about half the length of Atticus' spine, and is located approximately in the middle of his spine. The good news is that there's plenty of fluid around it, and it doesn't seem to be pressing on his spinal chord, since he's able to walk and use his hands.

Dr Kinsman wants to take time to research, observe, etc. Basically, he wants to take an "if it ain't broke..." approach due to Atticus' upcoming heart surgery. He'd rather get the Fontan out of the way first, since that effects his overall health. Then we can decide on what (if anything) we'll do about the cyst. Unfortunately, because of where its located, it would be too difficult to shunt it and drain it. Also, due to its size and location, Dr Kinsman wants to take a cautious approach so that we don't cause any damage that he doesn't have. All in all, we're left with more question than answers right now. I'll take the good news for now, and I'll let God and the doctors worry about what to do until its time. Please continue to keep us in your prayers. Please pray for our strength, for wisdom, for the doctors involved, and of course, keep on praying for Atticus!!

We have a date....

Hello everyone!  First, Happy Congenital Heart Defect (CHD) Awareness Day!  Also, Happy Valentine's Day! It's been a little busy around our household lately.  And that has a lot to do with some recent news we've gotten.  I received a phone call from Dr Bradley's office the other day.  His nurse was calling me with two possible dates for Atticus' surgery.  WHAT?!!  I thought we were following up with his cardiologist who was then going to pick a date with us?!  Some of this is still new for me.  We never left the hospital between Atticus' Norwood Procedure and his Glenn Procedure, so I'm not really familiar with the protocol for scheduling the next surgery.  I went with the earlier of the two dates, so it looks like Atticus will be having his Fontan on July 11th, 2012.  (Akk!  Less than 5 months to go!)  We'll have to check into the hospital on July 10th at 9:00 AM for his pre-surgery work up.  Which means we'll have to drive down the day before to stay with my sister and her husband.  I'm really not looking forward to this.  Its a day I've know was coming since before Atticus was even born, but I'm still not ready.  (Honestly, is anyone who has to go through this EVER really ready?)  I don't like to think about it too much, until its getting closer to time to go.  The thoughts of having to hand my baby over to the doctors and surgeons is too much.  To know that I am willingly giving him over to their care, so that they can break his sternum again to repair his heart, is gut wrenching.  To know that he'll be put back on not only a heart/lung bypass machine again, but also that accursed ventilator again is more than frustrating.  To know that he will be in pain, swollen, and delayed in his development makes me want to break down and cry.  Then I think about Sandy, Gideon and Robbie.  Atticus will be old enough to know if I'm gone from the hospital this time.  I won't be able to leave him with some one else.  He's a major "mama's boy".  Being somewhere strange, with complete strangers (to him anyway--they know him quite well!) would be too much for Atticus.  I'm praying that we are there for just a few weeks, and then back home again.  (Please keep this thought in your prayers too!!)  I know that Sandy and Gideon are older now, and they have a better grasp of what is going on this time around.  Sandy will be almost 7 years old, and Gideon will be 5 years old; versus 4 yrs old and 2.5 years old.  But the longer I'm gone, the harder it will be on them.  Sandy's birthday is August 17th, so I'm definitely praying we can be home by then!  (Otherwise we may have to plan a birthday in Charleston...)  Whew....that's a lot of "what ifs".  Again....it's why I don't like to think about it too much.  I'll worry myself to death.  And worrying doesn't change a thing.  I just continue to trust that no matter what happens, God has a plan for it all.  ("Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee..."  Jeremiah 1:5)

So since we got this news, I took a part time job to help save up before we have to go down there.  It's only about 20 hours a week, but the money is pretty decent.  Its already helping ease the budget up a little.  And we're going to need it.  Our car won't start now, so its in the repair shop.  (At least when it happened, God had a way to take care of it already in place!)  I'm glad we have such wonderful family and friends to help us out when things like this happen.

In the meantime, we're continuing to work with Atticus.  He's up to about 35 different signs now.  He's even starting to combine 2 signs at a time when asking for something!  (like "want, please" or "down, please" or "more bubbles", etc)  Its so awesome to watch his understanding grow.  He really likes cars.  Atticus recently discovered Gideon's "Batmobile" car.  It has a turn switch on the back that activates it and then it will zoom across the floor for the entire length of the room.  He LOVES it.  He'll turn it on, let it zoom, then go crawling after it!  He's learning to color, and I think he's going to be a lefty.  :)  Now to get him to quit putting them in his mouth!  Lol!  He's also quite demanding about wearing his hearing aids.  He wakes up in the morning and after he gets dressed, he'll do the sign for "hearing aid" and fuss until he sees that I'm going for them.  I was really impress a few days ago when he started pointing to his left ear and doing the sign for "hearing aid", even though he was wearing it.  He kept doing the sign, and pointing, getting frustrated, when I decided to take it out and check it.  Sure enough....the battery was dead!  I got it a fresh battery, put it back in his ear, and he started smiling!  It was the first time he had let me know that the hearing aid wasn't working while he was wearing it!  Progress!  Progress!

Well, its getting late enough for this old lady.  Please continue to keep us in your thoughts and prayers.  We have a big journey ahead of us, so I'll update more as we get closer to the big day!

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!